by harveythewonderhorse » Sun Jan 04, 2009 6:14 pm
soles of both feet feel like they are badly sunburnt, all the time, gabapentin helps tone it down. Left side muscles all tight (the "ms hug" ) amiltriptilne helps. Legs muscles get very very sore by the end of the day, like I'd been out on the horse for hours(I wish!!) Scalp-of all places, feels tight and sore to touch, haairdressers with long nails a nightmare)
horse of a horse!
Diagnosed 2001, r/r.
Diagnosed 2001, r/r.
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by jimmylegs » Sun Jan 04, 2009 6:17 pm
hi tt, yea with the toe pain, it sounds gouty which would be very unusual in an ms patient UNLESS they were cranking loads of inosine, which you aren't. but that's good that they'll have a test result for you soon. i'd like to hear what they come back with if you don't mind!
natural calm definitely worked for me to help going to sleep, and also to calm spastic muscles. i've had reports of it helping all kinds of different symptoms. if you can boost your magnesium foods too, that's best for absorption. mag plays nice with potassium. swiss chard is the golden boy with both those goodies in profusion. not my fave dark leafy green, but i guess it's worth it!
i don't have much pain per se though, just annoying tension in my arms sometimes. sometimes i do think i'm getting a hint of neuropathic burning pain around my mouth but i bump up the supplements for a few days and it heads it off. i think i attribute that mostly to the b-complex but i don't take only that so can't be sure!
so you're doing the self care thing too huh? what supps will you be taking besides magnesium?
natural calm definitely worked for me to help going to sleep, and also to calm spastic muscles. i've had reports of it helping all kinds of different symptoms. if you can boost your magnesium foods too, that's best for absorption. mag plays nice with potassium. swiss chard is the golden boy with both those goodies in profusion. not my fave dark leafy green, but i guess it's worth it!
i don't have much pain per se though, just annoying tension in my arms sometimes. sometimes i do think i'm getting a hint of neuropathic burning pain around my mouth but i bump up the supplements for a few days and it heads it off. i think i attribute that mostly to the b-complex but i don't take only that so can't be sure!
so you're doing the self care thing too huh? what supps will you be taking besides magnesium?
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by tt89 » Sun Jan 04, 2009 6:30 pm
Hi JimmyLegs...
Well Im on Vit D ( since it was depleated in my blood test from a few months back...actually from the start of my diagnosis which was in Jan 08).....I take 50,000 IU's two times a week per the docs...
I'm going to take the Mag and add B....any suggestions on B complex.
I really don't do anything other than take the BIG pain meds for when the pain is BIG and even then I take very little. It's Lortab Elixer of which I have my original RX since diagnosis....It calls for 3 teaspoons evey 6 hours...HA HA
I take ONE Teaspoon maybe once or twice a week if that....
My Pain is really odd..Morning pain but at night I have where my muscles ache like I need to STRECH them but then if I do..they lock up...I have nerve pain in the right leg..
Not sure if the TOE is gouty because I read up on that just now and don't fall into any of the symptoms other than a sore toe in the top corner..could be the nerve pain thingy....
I will for sure keep you updated..
do you have RRMS? That is what I have...
Im not going to deal with those shots anymore. No benefits..none WORTH taking them for..even if the MRI shows more stuff on it...I'll keep going this way...I simply do NOT buy into the shots..I have them mega chances a few times and types..and NO WAY....Done with that..I keep thinking I MAY have to go back but I seriously do not want to and will fight it with all I have...
See the Neuro Doc on Jan 12 and it won't be good. They will NOT be happy Im off all the meds. I flushed it all. Baclofen, Neurontin, Provigil, SHOTS, all of it is gone...
Thanks for everything
Well Im on Vit D ( since it was depleated in my blood test from a few months back...actually from the start of my diagnosis which was in Jan 08).....I take 50,000 IU's two times a week per the docs...
I'm going to take the Mag and add B....any suggestions on B complex.
I really don't do anything other than take the BIG pain meds for when the pain is BIG and even then I take very little. It's Lortab Elixer of which I have my original RX since diagnosis....It calls for 3 teaspoons evey 6 hours...HA HA
I take ONE Teaspoon maybe once or twice a week if that....
My Pain is really odd..Morning pain but at night I have where my muscles ache like I need to STRECH them but then if I do..they lock up...I have nerve pain in the right leg..
Not sure if the TOE is gouty because I read up on that just now and don't fall into any of the symptoms other than a sore toe in the top corner..could be the nerve pain thingy....
I will for sure keep you updated..
do you have RRMS? That is what I have...
Im not going to deal with those shots anymore. No benefits..none WORTH taking them for..even if the MRI shows more stuff on it...I'll keep going this way...I simply do NOT buy into the shots..I have them mega chances a few times and types..and NO WAY....Done with that..I keep thinking I MAY have to go back but I seriously do not want to and will fight it with all I have...
See the Neuro Doc on Jan 12 and it won't be good. They will NOT be happy Im off all the meds. I flushed it all. Baclofen, Neurontin, Provigil, SHOTS, all of it is gone...
Thanks for everything
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by Cleremond2000 » Mon Jan 05, 2009 9:43 am
TT,
Good topic.
For me it feels like I have a constant low level buzzing in my legs. Mostly in my left. When I'm on my feet for more than 5 minutes, the fatigue starts setting in and I begin to feel like someone is turning up the force of gravity.
Ultimately I begin to feel like I'm struggling to walk through 3' of snow. Each step become very difficult to execute properly and my whole gait is thrown outta whack. My back begins to give out at about 15 minutes.
I'm still mobile...but man, do I hate gravity.
I sometimes get leg cramps in my shins and feet at night or if I sit wrong for a lon period of time.
All in all...not that bad...
I'm hanging in there. Every day is a new day.
Good topic.
For me it feels like I have a constant low level buzzing in my legs. Mostly in my left. When I'm on my feet for more than 5 minutes, the fatigue starts setting in and I begin to feel like someone is turning up the force of gravity.
Ultimately I begin to feel like I'm struggling to walk through 3' of snow. Each step become very difficult to execute properly and my whole gait is thrown outta whack. My back begins to give out at about 15 minutes.
I'm still mobile...but man, do I hate gravity.
I sometimes get leg cramps in my shins and feet at night or if I sit wrong for a lon period of time.
All in all...not that bad...
I'm hanging in there. Every day is a new day.
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by jimmylegs » Mon Jan 05, 2009 9:53 am
hi tt yep, rrms. so they say. we'll see :S hehehe
yea i didn't really suspect gout since you're an ms-er, that would be bizarre. but since it was the toe, and since i just had a friend dealing with gout it was kind of in the front of my mind!
anyway so if you're taking that much d, be certain to take 1200mg calcium daily, at least 600mg magnesium daily, and 50mg zinc.
i will be really curious to learn your current uric acid level, and then to hear if it changes if you decide to start taking zinc!
for the b-complex, i suggest b-100. you can megadose it for a few days, taking one b-100 with each meal and at bedtime.
then back off to one a day which is fine in the long term.
i used to get that thing where if you stretch your legs they lock up. mine would cramp especially in the back of the thigh. magnesium helps!
all these things have important other nutrients they like to play with so a solid multi wouldn't do you any harm.
also keep yourself hydrated! (that's my new thing hehe)
yea i didn't really suspect gout since you're an ms-er, that would be bizarre. but since it was the toe, and since i just had a friend dealing with gout it was kind of in the front of my mind!
anyway so if you're taking that much d, be certain to take 1200mg calcium daily, at least 600mg magnesium daily, and 50mg zinc.
i will be really curious to learn your current uric acid level, and then to hear if it changes if you decide to start taking zinc!
for the b-complex, i suggest b-100. you can megadose it for a few days, taking one b-100 with each meal and at bedtime.
then back off to one a day which is fine in the long term.
i used to get that thing where if you stretch your legs they lock up. mine would cramp especially in the back of the thigh. magnesium helps!
all these things have important other nutrients they like to play with so a solid multi wouldn't do you any harm.
also keep yourself hydrated! (that's my new thing hehe)
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by tt89 » Mon Jan 05, 2009 10:00 am
Thanks Jimmy
Oh I so need to drink WATER
I HATE WATER
I wish I could drink it like most do. I live on Diet Coke which Im sure is HORRIBLE but its just that I hate water..and Juice...ewww...and MILK for sure I'd never drink..Makes me really sick to my stomach. Even Skim...
What a mess I am...
I hear about my Diet Coke habit all the time from folks....but I can't help it....
Oh I so need to drink WATER
I HATE WATER
I wish I could drink it like most do. I live on Diet Coke which Im sure is HORRIBLE but its just that I hate water..and Juice...ewww...and MILK for sure I'd never drink..Makes me really sick to my stomach. Even Skim...
What a mess I am...
I hear about my Diet Coke habit all the time from folks....but I can't help it....
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by jimmylegs » Mon Jan 05, 2009 12:37 pm
oh my at least you KNOW it's horrible!
i used to hate water too, and i still don't drink enough..
i certainly don't drink milk either.
but neither do i drink pop, and i CAN'T STAND fake sweeteners, that's what makes *me* sick to my stomach!
can you stand herbal tea? i hope so because you better get used to it with the natural calm lol!
fyi i sweeten the natural calm just a smidge with plain old organic cane sugar. and a lot of times i can't even handle the full teaspoon of powder in a mug of hot water... our mugs are pretty small and personally i need the powder to be pretty diluted.
sometimes i put a squeeze of lemon.
i hope you can get used to it!
i used to hate water too, and i still don't drink enough..
i certainly don't drink milk either.
but neither do i drink pop, and i CAN'T STAND fake sweeteners, that's what makes *me* sick to my stomach!
can you stand herbal tea? i hope so because you better get used to it with the natural calm lol!
fyi i sweeten the natural calm just a smidge with plain old organic cane sugar. and a lot of times i can't even handle the full teaspoon of powder in a mug of hot water... our mugs are pretty small and personally i need the powder to be pretty diluted.
sometimes i put a squeeze of lemon.
i hope you can get used to it!
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by notasperfectasyou » Mon Jan 05, 2009 12:47 pm tt89 wrote:I do have this thing the last few days where the pain shoots up from my heel on my right foot to my hips..and its horrible. I don't know if its MS or I hurt myself. I can't even tell.
I had that. I saw a neurosurgeon. Had a disctectomy/laminectomy and .... bang, pain was gone and I could function. It won't fix the ms, but maybe you have what I had, forgot the actual name for it. Ken
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by tt89 » Mon Jan 05, 2009 1:31 pm
Jimmy you are too funy
Yes I've been TRYING to steer away slowly from the Diet Soda. Now I cannot drink real soda...I hate sugar! but I can do diet soda
Lately I like hot apple cider...for some reason..crazy!
Ok...Thanks for so much....endless thanks to you and everyone
Ken- I will look into that for sure. How involved was the procedure...
I had to have a biopsy of my thyroid done which failed because suddenly I have a BAD allergy to Lidocaine so they are afraid to numb me for anything until we figure out what I can have. This is suppose to be a rare allergy....not sure how I developed it...
Thanks for everything
Yes I've been TRYING to steer away slowly from the Diet Soda. Now I cannot drink real soda...I hate sugar! but I can do diet soda
Lately I like hot apple cider...for some reason..crazy!
Ok...Thanks for so much....endless thanks to you and everyone
Ken- I will look into that for sure. How involved was the procedure...
I had to have a biopsy of my thyroid done which failed because suddenly I have a BAD allergy to Lidocaine so they are afraid to numb me for anything until we figure out what I can have. This is suppose to be a rare allergy....not sure how I developed it...
Thanks for everything
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by notasperfectasyou » Mon Jan 05, 2009 2:16 pm tt89 wrote:Ken- I will look into that for sure. How involved was the procedure...
It was surgery at a hospital. I was out in a day. I had to do PT for several weeks, but the pain was completely done, has been for years. I spent years going to the orthopedic about it and they would give me percocet and physical therapy. After 20 years of percocet and PT I got sick of the whole thing and told them I wasn’t doing it anymore and I wanted a different solution. That’s when they said I might want to see a neurosurgeon. Amazing, wish I had gotten fed up with it all sooner. Ken
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by notasperfectasyou » Mon Jan 05, 2009 3:11 pm jimmylegs wrote:20 YRS OF PERCS????? i'm amazed your body isn't manufacturing migraines or some other pain, left and right, to get the meds back.
LOL!!!
No, not constant. Think of them like Solumedurol. I'd get a spine issue about once every 2 years and over time it got more regular. By the time I was "done" I had 4 within 12 months. I hated taking them and would ween myself off as quick as possible. Ken
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by jimmylegs » Mon Jan 05, 2009 4:16 pm
here's what thinking of something like solumedrol means for me:
____________________________________________________
(read: i have no idea)
anyway, gotcha, intermittent. good call with the weaning!
____________________________________________________
(read: i have no idea)
anyway, gotcha, intermittent. good call with the weaning!
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by notasperfectasyou » Mon Jan 05, 2009 8:49 pm
ok, ok ....
you take them for a few days until you feel better. I don't think the script is generally more than 2 weeks.
Solumedural is a steroid IV that's done to settle exaserbations. The IV is generally once a day for 5 days.
and I don't know anythign about zinc.
Ken
you take them for a few days until you feel better. I don't think the script is generally more than 2 weeks.
Solumedural is a steroid IV that's done to settle exaserbations. The IV is generally once a day for 5 days.
and I don't know anythign about zinc.
Ken
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by jimmylegs » Wed Jan 07, 2009 1:19 pm
miss tt. a note for your reference:
http://www.blatmanpainclinic.com/blat_articles_12.htm
Foods and Medications That Contribute to Nervous System Damage Should Not Be Eaten
* Nutrasweet/Aspartame
* Olestra
* Margarine
* Aspartame
o Aspartame causes elevation in serum methanol
+ Knopp et al., J Toxicol Environ Health, 1976;2:417-428
o Aspartame causes increase in serum methanol in rats and humans
+ Stegink et al J Nutr. 1983:113:1600-1606
o Aspartame completely metabolized in gut and absorbed as aspartate, phenylalanine, and methanol, but doesn’t cause heath problem
+ Leon et al. Arch Intern Med. 1989;149:2318-2324
o Oral aspartame caused rise in serum methanol in men and rats
+ Cappellini Metabolism 1991;Jun;40(6):612-18
o Dietary labeled aspartame results in labeled formaldehyde bound to tissue in rats
+ Trocho et al. Departament de Bioquimica, Universitat de Barcelona, Spain.
o Repeated
+ by Hertelendy et al. Gastroenterol. 1993;88:737-743
ICMP Journal Spring 1997 (International Congress for Medical Professionals)
* Aspartame
o 40% aspartic acid
o 50% phenylalanine
o 10% methanol -- converts to
+ Formaldehyde and formic acid (ant sting poison)
* Free methanol is created when heated above 86°F
o Cumulative poison – slow rate of excretion
o 7.8 mg/day (EPA)
o Average diet drink 15-36mg/can
* Woodrow et al. Journal Appl Nutr 35(1):42-53
Methanol Is Neurotoxic
* CNS dysfunction
* Brain tumors
* Chronic widespread body pain in some patients
http://www.blatmanpainclinic.com/blat_articles_12.htm
Foods and Medications That Contribute to Nervous System Damage Should Not Be Eaten
* Nutrasweet/Aspartame
* Olestra
* Margarine
* Aspartame
o Aspartame causes elevation in serum methanol
+ Knopp et al., J Toxicol Environ Health, 1976;2:417-428
o Aspartame causes increase in serum methanol in rats and humans
+ Stegink et al J Nutr. 1983:113:1600-1606
o Aspartame completely metabolized in gut and absorbed as aspartate, phenylalanine, and methanol, but doesn’t cause heath problem
+ Leon et al. Arch Intern Med. 1989;149:2318-2324
o Oral aspartame caused rise in serum methanol in men and rats
+ Cappellini Metabolism 1991;Jun;40(6):612-18
o Dietary labeled aspartame results in labeled formaldehyde bound to tissue in rats
+ Trocho et al. Departament de Bioquimica, Universitat de Barcelona, Spain.
o Repeated
+ by Hertelendy et al. Gastroenterol. 1993;88:737-743
ICMP Journal Spring 1997 (International Congress for Medical Professionals)
* Aspartame
o 40% aspartic acid
o 50% phenylalanine
o 10% methanol -- converts to
+ Formaldehyde and formic acid (ant sting poison)
* Free methanol is created when heated above 86°F
o Cumulative poison – slow rate of excretion
o 7.8 mg/day (EPA)
o Average diet drink 15-36mg/can
* Woodrow et al. Journal Appl Nutr 35(1):42-53
Methanol Is Neurotoxic
* CNS dysfunction
* Brain tumors
* Chronic widespread body pain in some patients
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by jimmylegs » Wed Jan 07, 2009 1:24 pm
hi jaded sorry i missed this question earlier.
i am not the mountain of knowledge though, thank the googlematic extendabrain. although i guess some of that reading does stick, a little
glucocorticoid is one of the drugs that can deplete the b-complex resulting in neuropathic pain.
i was asking if you had had any gc treatments to see if maybe that would be why you were having your problems with burning.
what medications do you take? i could look for nutrient interactions and see if anything turns up.
J.
i am not the mountain of knowledge though, thank the googlematic extendabrain. although i guess some of that reading does stick, a little
glucocorticoid is one of the drugs that can deplete the b-complex resulting in neuropathic pain.
i was asking if you had had any gc treatments to see if maybe that would be why you were having your problems with burning.
what medications do you take? i could look for nutrient interactions and see if anything turns up.
hi jimmy
no I don't get glutocorticoid anything...what would that help and how could I get that?
You are such a mountain of knowledge - much appreciated as ever.
J.
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by notasperfectasyou » Wed Jan 07, 2009 1:56 pm jimmylegs wrote:o okay thanks for the explanation. now do you want to know about zinc at all?
No, I want to avoid all new information, I want to only know what the neurologist tells me.
Please do share.........
Ken
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MRI RESULTS
by tt89 » Wed Jan 07, 2009 4:25 pm
I got my MRI results....but I see the docs tomorrow. They changed my appt but they called
Ok..Drum Roll Please
The spot on the left side of my brain has all but disappeared. It has drastically decreased. They had several radiologists look at the films before lettting me know. The main on I have is still there and unchanged..not worse but the same but the other one..is almost gone. they said its a miracle..not seen to often..is that true? Well I pray alot so I think my prayers were heard...either way...its good news!
WOW.....and this is with NO SHOTS for 6 mos..but the docs don't know that and they were like "Stay on the shots..they are helping"....so now I have to fess up when I am seen tomorrow and I know I'll be met with lots of attitude...they seriously want me on some sort of shots....
Any ideas how to deal with that. I will plead my case best I can but I notice the PA I see when the Neuro is not there...cops an attitude at the NO MEDS thingy...I went through that with her when I stopped Betasron..and thats how I got on Copaxone..I caved in.
Ok...Blood Tests revealed...Vit D dropped again..so back to Rx of that.
My WBC was high...which explains the nonstop fever I battle and we are going to have to figure that out. I think they are doing blood cultures tomorrow..... My Potassium was low but I have that happen at times for that they want more OJ and Bannanas ( Don't worry Jimmy..still not giving up the Diet Coke)
Ok....I got my Nature Calm Magnesium in today!!! I made my first mug...how much a day do you take and when did you notice you felt better.
I was soooooo happy to get that package!
I'm going to have them test that too. They didn't test it last time.
Thanks to all...
I'm happy about the MRI!!!! Im still in the RRMS catagory they said..I love it....CATAGORY!!! Sheesh
Look forward to hearing from you
T
Ok..Drum Roll Please
The spot on the left side of my brain has all but disappeared. It has drastically decreased. They had several radiologists look at the films before lettting me know. The main on I have is still there and unchanged..not worse but the same but the other one..is almost gone. they said its a miracle..not seen to often..is that true? Well I pray alot so I think my prayers were heard...either way...its good news!
WOW.....and this is with NO SHOTS for 6 mos..but the docs don't know that and they were like "Stay on the shots..they are helping"....so now I have to fess up when I am seen tomorrow and I know I'll be met with lots of attitude...they seriously want me on some sort of shots....
Any ideas how to deal with that. I will plead my case best I can but I notice the PA I see when the Neuro is not there...cops an attitude at the NO MEDS thingy...I went through that with her when I stopped Betasron..and thats how I got on Copaxone..I caved in.
Ok...Blood Tests revealed...Vit D dropped again..so back to Rx of that.
My WBC was high...which explains the nonstop fever I battle and we are going to have to figure that out. I think they are doing blood cultures tomorrow..... My Potassium was low but I have that happen at times for that they want more OJ and Bannanas ( Don't worry Jimmy..still not giving up the Diet Coke)
Ok....I got my Nature Calm Magnesium in today!!! I made my first mug...how much a day do you take and when did you notice you felt better.
I was soooooo happy to get that package!
I'm going to have them test that too. They didn't test it last time.
Thanks to all...
I'm happy about the MRI!!!! Im still in the RRMS catagory they said..I love it....CATAGORY!!! Sheesh
Look forward to hearing from you
T
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by cheerleader » Wed Jan 07, 2009 4:35 pm
T-
So happy for you. Nothing is written in stone with MS...your MRI proves that. Stay the course, and keep healing!
Jeff takes 600mg. of Natural Calm at night before bed...about 3 teaspoons. I gave him 3 tablespoons the first time we tried it (forgot my glasses) and he had to stay close to the toilet the next day
( Was that TMI?) Mag citrate is a laxative.
Enjoy your miracle, and know that we're all cheering you on-
AC
So happy for you. Nothing is written in stone with MS...your MRI proves that. Stay the course, and keep healing!
Jeff takes 600mg. of Natural Calm at night before bed...about 3 teaspoons. I gave him 3 tablespoons the first time we tried it (forgot my glasses) and he had to stay close to the toilet the next day
( Was that TMI?) Mag citrate is a laxative. Enjoy your miracle, and know that we're all cheering you on-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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by jimmylegs » Wed Jan 07, 2009 5:45 pm
LMAO cheer i forgot about that tablespoon episode HAHA
i can't take natural calm that strong unfortunately. i had some pills that were 250mg mag citrate for a while. if i took three in a day, look out.
so about how long it takes, what happened to me was a pharmacist told me to take it, and i took probably only 250 per day for about two days, and i got better. i thought it was crazy and stopped, and the problems came back. so i started again, and the problems went away again. then i noticed that i could feel the magnesium kicking in about 2 hours after i took it. now, i have enough stored up that my muscles don't actually palpitate when the magnesium hits. but yea you shouldn't have to wait for long. great news about that disappearing lesion! fight the power... and diet coke lol
i can't take natural calm that strong unfortunately. i had some pills that were 250mg mag citrate for a while. if i took three in a day, look out.
so about how long it takes, what happened to me was a pharmacist told me to take it, and i took probably only 250 per day for about two days, and i got better. i thought it was crazy and stopped, and the problems came back. so i started again, and the problems went away again. then i noticed that i could feel the magnesium kicking in about 2 hours after i took it. now, i have enough stored up that my muscles don't actually palpitate when the magnesium hits. but yea you shouldn't have to wait for long. great news about that disappearing lesion! fight the power... and diet coke lol
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by Jaded » Thu Jan 08, 2009 12:47 am
Hi jimmy
i take ldn, that's all. I have supps but I don't take them as regularly as I should.
When I was tested after my dx a few years ago I was majorly down on vitamin b's and d. I did take them regularly for ages....just got sidetracked I guess.
cheers
J.
i take ldn, that's all. I have supps but I don't take them as regularly as I should.
When I was tested after my dx a few years ago I was majorly down on vitamin b's and d. I did take them regularly for ages....just got sidetracked I guess.
cheers
J.
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by tt89 » Thu Jan 08, 2009 3:12 am
Oh boy did I ever laugh. You guys are always great for lifting one spirits...I was feeling pretty good but you so made me laugh about the Natures Calm Mag..
I only drank one mug with one 1 spoon...Sheesh....Glad I didn't do more...it says you can do up to 3 spoons...Think I will wait till I do something like that...
I'll give you the rest of the details very soon.
Thanks a bunch for everything
Im having the right leg checked out for other stuff and the pesky fever too. I have fallen about 5 times in the last 6 mos and so perhaps my right leg is so bad due to the falls and may have injured something
Sometimes its hard to tell between MS and something else
I only drank one mug with one 1 spoon...Sheesh....Glad I didn't do more...it says you can do up to 3 spoons...Think I will wait till I do something like that...
I'll give you the rest of the details very soon.
Thanks a bunch for everything
Im having the right leg checked out for other stuff and the pesky fever too. I have fallen about 5 times in the last 6 mos and so perhaps my right leg is so bad due to the falls and may have injured something
Sometimes its hard to tell between MS and something else
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by jimmylegs » Thu Jan 08, 2009 6:51 am
wow where are you j? can't get bloodwork covered? i usually would only pay for the more "out-there" tests. like i think i did homocysteine and mma one time before i knew what the heck i was doing.
did you see that post by nick where you can get an in-home d3 test for $65 (i presume CDN) whereas lab tests usually cost one or two hundred bucks?
did you see that post by nick where you can get an in-home d3 test for $65 (i presume CDN) whereas lab tests usually cost one or two hundred bucks?
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by jimmylegs » Thu Jan 08, 2009 7:28 am
ouch! i used to have a doc like that, no fun. 
by jimmylegs » Thu Jan 08, 2009 7:30 am
most of my fam is in the UK or at least started there - me and my bro are the only canucks
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by tt89 » Thu Jan 08, 2009 7:54 am
Ok..Headed to the Neuro Docs....Should be fun. They think I've been on shots the last 6 months....They won't be happy I have not...but I'll remind them about my MRI..looking BETTER
Im sure they will find a way to talk SHOTS with me....UGH
Update soon
Im sure they will find a way to talk SHOTS with me....UGH
Update soon
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by jimmylegs » Thu Jan 08, 2009 8:25 am
tt i had a read back over older posts re magnesium, back in early sept - you noticed some improvement before, did the mag run out and then your pain returned? and all along you haven't been able to really sort out the d3 level?
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UPDATE
by tt89 » Thu Jan 08, 2009 8:24 pm
OK Here is goes
Jimmy..Yes I have had a constant Mag and Vit D issue but nothing really helped...they'd go back up but then drop again.. as well as Potassium.
Fever still present...they did a U/A to make sure there is not UTI..I would not know if I had one or not. I have to potty 100 times a day/night and to the point I don't get good sleep but there is also an issue of a "Virus" due to being overseas.
Leg pain- may not be an MS thing..the muscle part/cramps yes but the nerve thingy..no because it generates in the foot....like the back of my heel... going to see Ortho for that. She referred me to one.
Told them about NO MEDS. They sort of figured I'd go off them as I was just not sold on them from jump street and to me I feel better OFF them. I got the speech about several of their patients who are my age group and in Nursing homes because they cannot walk, do this or that..as a result of NOT taking the shots. Not sure what to think about that.
I saw my MRI...Looks really good on the left..the other spot is unchanged..
One Nurse I know from somewhere else brought up this point of "Are you SURE you have MS...I mean two spots does not qualify a diagnosis of MS" but thats what I've been told over and over by the docs..I do have MS. Confirmed with MRI, Spinal Tap ( positive for Onco Bands..etc).. She feels I have some sort of Neuro Virus....
Ok..next..They want me to try a small amount of Baclofen again at bedtime... Not sure yet about that
Im on my Vit D, B and the Mag now..and the pain meds as needed. They remarked how well I handle my pain..and how little pain meds Ive used in the last year. They also said "don't stay in pain just not to use a narc med for pain..if you need it take it" Well I'll be the judge of that...and how much I need/use...I don't like that stuff to start with.
She felt my walking was stiff but today was a not so good day. She did say my neuro tests..reflexes and all were good.
Blood pressure up some. I think that was stress of being in that place...
They are going to have me repeat bloodwork....in a week..and will let me know about the U/A test. They did do blood cultures..
Oh and...No Gout....Uric Acid was perfect...so thats good news..she attributes that nerve pain to either an injury from the few falls I have had or the MS...but we will see what Neuro says and have an MRI done for the leg..
Can't think of anything else...but if I do I'll post
Thanks to all
Oh...they SERIOUSlY want me back on meds. They said only Copaxone or they will consider Tysabri....due to my not being able to handle Betaseron/Interferons...no more of that..not even trying Rebif and Avenox they do not like
Jimmy..Yes I have had a constant Mag and Vit D issue but nothing really helped...they'd go back up but then drop again..
as well as Potassium. Fever still present...they did a U/A to make sure there is not UTI..I would not know if I had one or not. I have to potty 100 times a day/night and to the point I don't get good sleep but there is also an issue of a "Virus" due to being overseas.
Leg pain- may not be an MS thing..the muscle part/cramps yes but the nerve thingy..no because it generates in the foot....like the back of my heel... going to see Ortho for that. She referred me to one.
Told them about NO MEDS. They sort of figured I'd go off them as I was just not sold on them from jump street and to me I feel better OFF them. I got the speech about several of their patients who are my age group and in Nursing homes because they cannot walk, do this or that..as a result of NOT taking the shots. Not sure what to think about that.
I saw my MRI...Looks really good on the left..the other spot is unchanged..
One Nurse I know from somewhere else brought up this point of "Are you SURE you have MS...I mean two spots does not qualify a diagnosis of MS" but thats what I've been told over and over by the docs..I do have MS. Confirmed with MRI, Spinal Tap ( positive for Onco Bands..etc).. She feels I have some sort of Neuro Virus....
Ok..next..They want me to try a small amount of Baclofen again at bedtime... Not sure yet about that
Im on my Vit D, B and the Mag now..and the pain meds as needed. They remarked how well I handle my pain..and how little pain meds Ive used in the last year. They also said "don't stay in pain just not to use a narc med for pain..if you need it take it" Well I'll be the judge of that...and how much I need/use...I don't like that stuff to start with.
She felt my walking was stiff but today was a not so good day. She did say my neuro tests..reflexes and all were good.
Blood pressure up some. I think that was stress of being in that place...
They are going to have me repeat bloodwork....in a week..and will let me know about the U/A test. They did do blood cultures..
Oh and...No Gout....Uric Acid was perfect...so thats good news..she attributes that nerve pain to either an injury from the few falls I have had or the MS...but we will see what Neuro says and have an MRI done for the leg..
Can't think of anything else...but if I do I'll post
Thanks to all
Oh...they SERIOUSlY want me back on meds. They said only Copaxone or they will consider Tysabri....due to my not being able to handle Betaseron/Interferons...no more of that..not even trying Rebif and Avenox they do not like
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by jimmylegs » Fri Jan 09, 2009 5:13 am
hey there tt, wonder what's constantly dragging your mag d and potassium down. other than your body using those nutrients i mean. have you ever had a full nutrient panel done? that could turn up a problem or two. i never really expected, when i asked for mine, that i was going to come back so crazy low in zinc.
what was the uric acid number, with units? this is important because it's one thing to have high uric acid and gout, and another thing to have "the ms average" low uric acid. which my docs also said was 'perfect'. if you have ms average uric acid, it may be something to consider working on.
what's the d3 number over time in nmol/L or whichever units your lab uses, and how does it relate to your supp regimen over time?
what have they got you on for an rx d3 daily regimen at this stage?
good to see an ortho over the foot for sure.
in the meantime, enjoy your natural calm
JL
what was the uric acid number, with units? this is important because it's one thing to have high uric acid and gout, and another thing to have "the ms average" low uric acid. which my docs also said was 'perfect'. if you have ms average uric acid, it may be something to consider working on.
what's the d3 number over time in nmol/L or whichever units your lab uses, and how does it relate to your supp regimen over time?
what have they got you on for an rx d3 daily regimen at this stage?
good to see an ortho over the foot for sure.
in the meantime, enjoy your natural calm
JL
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by remnants » Fri Jan 09, 2009 4:53 pm
Pain is my major issue. Its actually what led to my diagnosis. I have allodynia or other pain. This is a hypersensitive sensation. I feel it in my hands, feet, abdomen, and back. It feels as if someone took 60 grit sandpaper and sanded my skin off and that's on a good day. On a bad day, it feels like they used 40grit sandpaper. It hurts to shower with a shower head designed to mimic gentle rainfall, hurts to get dressed or cover with blankets. Pretty much anything, even the slightest contact is experienced as pain. This pain has been constant for more than four years now. This is not the same as the tingling, pins and needles or burning pain most commonly associated with MS. I get those too, but they're not as disabling to me. I read one man's account of living with allodynia nd he wrote, "My allodynia imprisons me." I couldn't put it any better.
Every morning I awaken torn between the desire to save the world and the inclination to savor it.
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by tt89 » Fri Jan 09, 2009 5:44 pm
Oh Remnants...Im so sorry you go through such horrible pain...that sounds terrible..isn't there a thing they can do to help you?
Ok folks.. Help the NURSE that is still CLUELESS about mS
I got up sick this morning..I run a low grade fever constantly and then it spikes....but besides that..
and I get this OFTEN....I get where my legs feel so bad...it feels like I want to stretch them but I can't...and just feel horrible..THey do tingle and burn some but it feels like I want to stretch them but I cant....and I just hurt....I again cannot explain it.....its so frustrating...but today was one of the bad days I talk about. I had to lay on the couch for a few hours before I could do anything...
Is that what you all feel too?
As for the fever..Still clueless.....my U/A was PERFECT. NO UTI...
any other thoughts?
I had an MS Nurse tell me she was stunned I was diagnosed with MS...because I only had two spots, one which is almost gone now..and that does not give them enough criteria to say MS..is that true?
What else could it be? Spinal Tap was positive for Onco Bands...
UGH!
Thanks everyone...
Ok folks.. Help the NURSE that is still CLUELESS about mS
I got up sick this morning..I run a low grade fever constantly and then it spikes....but besides that..
and I get this OFTEN....I get where my legs feel so bad...it feels like I want to stretch them but I can't...and just feel horrible..THey do tingle and burn some but it feels like I want to stretch them but I cant....and I just hurt....I again cannot explain it.....its so frustrating...but today was one of the bad days I talk about. I had to lay on the couch for a few hours before I could do anything...
Is that what you all feel too?
As for the fever..Still clueless.....my U/A was PERFECT. NO UTI...
any other thoughts?
I had an MS Nurse tell me she was stunned I was diagnosed with MS...because I only had two spots, one which is almost gone now..and that does not give them enough criteria to say MS..is that true?
What else could it be? Spinal Tap was positive for Onco Bands...
UGH!
Thanks everyone...
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by tt89 » Sat Jan 10, 2009 1:36 pm
I woke up today feeling BETTER...NO tightness, soreness nothing..I got out of bed expecting the SAME pain..
Only my right leg/ankle is a little sore and we think its from one of my falls and will be looked at this week BUT overall
I FEEL BETTER TODAY....and yesterday I felt cruddy!
I think its the magnesium....
Oh THANK YOU THANK YOU Jimmy Legs!
More soon
T
Only my right leg/ankle is a little sore and we think its from one of my falls and will be looked at this week BUT overall
I FEEL BETTER TODAY....and yesterday I felt cruddy!
I think its the magnesium....
Oh THANK YOU THANK YOU Jimmy Legs!
More soon
T
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by jimmylegs » Sat Jan 10, 2009 5:35 pm
no probs tt, glad you can drink it all right!
now i just wonder, for you and for me both... how can we get it to STAY?? surely we don't have to drink mag tea all day every day just to stay relaxed???
now i just wonder, for you and for me both... how can we get it to STAY?? surely we don't have to drink mag tea all day every day just to stay relaxed???
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by tt89 » Sat Jan 10, 2009 5:36 pm
You know GOOD Question
Im almost afraid to STOP drinking it
I really still feel good tonight
Well its 2036 hours here. Im in North Carolina in the USA. Are you stateside or overseas?
Thank you SO much for helping me with the mag stuff!
Im almost afraid to STOP drinking it
I really still feel good tonight
Well its 2036 hours here. Im in North Carolina in the USA. Are you stateside or overseas?
Thank you SO much for helping me with the mag stuff!
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by jimmylegs » Sat Jan 10, 2009 5:48 pm
heya tt 
glad you are still feeling good. magnesium is a life saver huh! i'm in the same time zone as you but up in the great white north eh. just got home from an 11 hour shift at the ski hill i'm still in my snowpants heating up some FOOD
but i already had a mag tea
glad you are still feeling good. magnesium is a life saver huh! i'm in the same time zone as you but up in the great white north eh. just got home from an 11 hour shift at the ski hill i'm still in my snowpants heating up some FOOD but i already had a mag tea
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by Dixie_Amazon » Sun Jan 11, 2009 8:51 am
My pain feels like burning pins and needles. Usually in patches in various locations, but I have had episodes with it all over from the neck down.
Dennise
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In diagnosis limbo.
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by jimmylegs » Sun Jan 11, 2009 5:13 pm
heya dix, dx limbo suuucks. what other symptoms do you have besides the pins and needles/burning? if you want any advice on symptom management related to nutrition there are a few folks on here myself included
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by Dixie_Amazon » Mon Jan 12, 2009 1:00 am
I have dizziness, brain fog and some girdling pain in my ribcage. Oh and fatigue, how could I forget the fatigue?
After MRIs (non-specific white spots), EEG (slowing of some parts of the brain) and a Nerve Conduction study (carpal tunnel in both hands, nothing else. My Neuro is taking a wait and see position. I am thinking getting a second opinion.
I am interested in supplementation. I have already started vitamin D. My Endo tested me for that and I was very low. Fish Oil makes me sick but I did start on EFAs. I also take B-12 and am thinking of adding Ginko.
After MRIs (non-specific white spots), EEG (slowing of some parts of the brain) and a Nerve Conduction study (carpal tunnel in both hands, nothing else. My Neuro is taking a wait and see position. I am thinking getting a second opinion.
I am interested in supplementation. I have already started vitamin D. My Endo tested me for that and I was very low. Fish Oil makes me sick but I did start on EFAs. I also take B-12 and am thinking of adding Ginko.
Dennise
In
In
by Artifishual » Mon Jan 12, 2009 5:30 am Dixie_Amazon wrote:My pain feels like burning pins and needles. Usually in patches in various locations, but I have had episodes with it all over from the neck down.
Hi ya Dixie!! Me and you are practically neighbors
I live in the Beaumont TX area!!! Howdy - Artifishual
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by Dixie_Amazon » Mon Jan 12, 2009 6:31 am
Hi neighbor! ![Image]()
Enjoying the bouncing around weather?
![Image]()
Enjoying the bouncing around weather?
Dennise
In diagnosis limbo.
In diagnosis limbo.
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by Artifishual » Mon Jan 12, 2009 9:49 am
yeah it's crazy isn't it?!?!?! one day 6" snow, the next sweating your butt off and this morning it was like 30 degrees. Really good for the old ms, LOL
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by tt89 » Mon Jan 12, 2009 7:35 pm
Happy To Report that Im feeling better!!!!!!
I mean could it really be the Magnesium that is doing the trick. I can't explain it. Sure I still have MS, sure some of the stuff is there that reminds me I have it BUT overall my legs feel better and I feel better. I walked two times today.....and other than my sore ankle/heel ( which I see the doc for on thursday), I feel GOOD!
Just needed to report this
Thanks Jimmylegs!!!!!
I mean could it really be the Magnesium that is doing the trick. I can't explain it. Sure I still have MS, sure some of the stuff is there that reminds me I have it BUT overall my legs feel better and I feel better. I walked two times today.....and other than my sore ankle/heel ( which I see the doc for on thursday), I feel GOOD!
Just needed to report this
Thanks Jimmylegs!!!!!
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by jimmylegs » Tue Jan 13, 2009 5:30 am
fantastic tt!!! keep up the good work
glad you're here early dixie, and taking control. can you tell me if you've had any bloodwork done that has to do with nutrition?
at any rate, even without a diagnosis it sounds to me like you can get some improvement with supplements.
ginkgo will likely help some with the brain fog. i get that a bit sometimes too, and the gingko helps me.
do you drink lots of water and/or herbal tea? if so, do keep it up!
the essential fatty acids are also an excellent idea. fish oil makes me gag too. i found a brand of 1000mg capsules which i keep in the fridge, and i take it right before i go to sleep. it's not ideal, but if it repeats on me, at least i never know about it
okay this next bit will be about B vitamins for nerve function, plus D3 and associated vits and mins for immune function and pain relief.
B-COMPLEX
i had carpal tunnel too. b vitamins are good for that, and for sensory problems too. the b-complex is used at high dosages in an old 70s protocol by klenner. without getting into the whole klenner regimen, you can megadose b-complex for a week and then level off.
in 2006 i modified the klenner protocol for my own use and ignored some of the details, even so it was one of the highlight moments of turning my symptoms around. good stuff. before that i had taken only b12 and it had worked to resolve numbness for a couple of years but then it stopped working. i have decided that it was because the rest of my b-complex was so depleted the b12 had nothing to work with. once i added the rest, it was miraculous.
to megadose b-complex approximately a la klenner, pick up a bottle of b-50 complex. take 2 with each meal for a week. then you can drop back to one or two b-50s per day.
VITAMIN D3
how much vit D do you take daily? you need to get the serum level up over 100nmol/L [40ng/mL] to minimize MS risk. there is published peer reviewed research on that. you might need a megadose to get you up into that range, then a maintenance daily dose that will vary depending on where you live and how much time you spend outside stark naked
my hospital says to jump 50nmol/L fast, take 50,000IU per day for 10 days. researcher vieth out of toronto says 4000IU per day is a good daily maintenance dose with no toxicity concerns. if you're out in the sun a lot in the summer, you can probably drop the daily to 2000 but bump it back up to 4000 in the winter (this is for if you live north of 40).
it is important to balance your d3 intake with 1200mg calcium, 600mg magnesium, 50mg zinc, and vitamin K.
MAGNESIUM
magnesium is very important in relieving symptoms in ms. calcium and magnesium are responsible for many things but one is the function of muscles, their contraction and relaxation. if your muscles are too tense, magnesium is very likely to help. i can't even keep track any more of how many people here and in my personal life have been helped with all kinds of diff symptoms using mag.
magnesium gets eaten up by d3 supplementation so you need to take some of your daily mag away from the d3. if you take one at bedtime it can help send you off to sleep. i suspect it will help with the pain at your ribcage, which sounds like our old pal the MS hug.
magnesium is hard to absorb so if you take too much at one time you'll be running for the loo. find as soluble a form as you can, like mag citrate. also get as much as you can from food sources.
ZINC
zinc is statistically lower in ms patients and it's VERY important. looking at the research, which you can find referenced elsewhere here on thisisms, women with ms average 12 (10-14) .[... i think the units are nmol/L there EDIT: nope the units are ยตmol/L]. healthy people have levels just over 18. i have read about excess symptoms starting up around the 22 mark. my lab says the normal range is 11.5-18.5... don't be fooled by the term "normal" range.
VITAMIN K
here on the forum, thanks to cureorbust, we are starting to pick up on the importance of vitamin K in the d3 balancing act. "high dose" d3 supplementation can interfere with vitamin K. i haven't checked yet on what amounts are needed to deplete K but i'm sure we'll get to it!
yesterday for the first time i saw a bottle of vitamind3 supps in the store, with vit K in it too. one bottle had 100mcg vit K blended with the d, and the other had 120mcg of vit K. sadly i didn't check the amount of d in each pill, but one was a jamieson product so that will be easy to check.
* * *
last of all to touch on antioxidants, the klenner protocol is big on antioxidants like C and E. besides being antioxidants, C helps you use the other nutrients you consume, and E is really important for the health of your blood vessels.
if you haven't already, you may soon read about the focus on vascular concerns in ms. the klenner protocol does not mention this, but it does discuss muscular and liver damage when not enough vit E is present.
VITAMINS C AND E
you can take a couple grams of C per day (klenner suggests up to 10g!), and for the E, the klenner protocol advises 800 IU with each meal. i did this for 3 days with no ill effects, and i don't *normally* take E every day but right now i'm taking 800IU every day.
i've read studies in rats looking at toxicity and they feed them 6000IU vit E per kg body weight every day. so if you decide to go for a short burst of E, i suggest trying to find a bottle of 400IU capsules containing a blend of 4 tocopherols and 4 tocotrienols. you can take 2 with each meal for a week and then back off to one per day. that high dose regimen of 2400 units per day for a week works out to in the neighbourhood of probably 20-40IU/kg/d depending how much you weigh.
whew! holy moly it got late - better split for now take it easy
glad you're here early dixie, and taking control. can you tell me if you've had any bloodwork done that has to do with nutrition?
at any rate, even without a diagnosis it sounds to me like you can get some improvement with supplements.
ginkgo will likely help some with the brain fog. i get that a bit sometimes too, and the gingko helps me.
do you drink lots of water and/or herbal tea? if so, do keep it up!
the essential fatty acids are also an excellent idea. fish oil makes me gag too. i found a brand of 1000mg capsules which i keep in the fridge, and i take it right before i go to sleep. it's not ideal, but if it repeats on me, at least i never know about it
okay this next bit will be about B vitamins for nerve function, plus D3 and associated vits and mins for immune function and pain relief.
B-COMPLEX
i had carpal tunnel too. b vitamins are good for that, and for sensory problems too. the b-complex is used at high dosages in an old 70s protocol by klenner. without getting into the whole klenner regimen, you can megadose b-complex for a week and then level off.
in 2006 i modified the klenner protocol for my own use and ignored some of the details, even so it was one of the highlight moments of turning my symptoms around. good stuff. before that i had taken only b12 and it had worked to resolve numbness for a couple of years but then it stopped working. i have decided that it was because the rest of my b-complex was so depleted the b12 had nothing to work with. once i added the rest, it was miraculous.
to megadose b-complex approximately a la klenner, pick up a bottle of b-50 complex. take 2 with each meal for a week. then you can drop back to one or two b-50s per day.
VITAMIN D3
how much vit D do you take daily? you need to get the serum level up over 100nmol/L [40ng/mL] to minimize MS risk. there is published peer reviewed research on that. you might need a megadose to get you up into that range, then a maintenance daily dose that will vary depending on where you live and how much time you spend outside stark naked
my hospital says to jump 50nmol/L fast, take 50,000IU per day for 10 days. researcher vieth out of toronto says 4000IU per day is a good daily maintenance dose with no toxicity concerns. if you're out in the sun a lot in the summer, you can probably drop the daily to 2000 but bump it back up to 4000 in the winter (this is for if you live north of 40).
it is important to balance your d3 intake with 1200mg calcium, 600mg magnesium, 50mg zinc, and vitamin K.
MAGNESIUM
magnesium is very important in relieving symptoms in ms. calcium and magnesium are responsible for many things but one is the function of muscles, their contraction and relaxation. if your muscles are too tense, magnesium is very likely to help. i can't even keep track any more of how many people here and in my personal life have been helped with all kinds of diff symptoms using mag.
magnesium gets eaten up by d3 supplementation so you need to take some of your daily mag away from the d3. if you take one at bedtime it can help send you off to sleep. i suspect it will help with the pain at your ribcage, which sounds like our old pal the MS hug.
magnesium is hard to absorb so if you take too much at one time you'll be running for the loo. find as soluble a form as you can, like mag citrate. also get as much as you can from food sources.
ZINC
zinc is statistically lower in ms patients and it's VERY important. looking at the research, which you can find referenced elsewhere here on thisisms, women with ms average 12 (10-14) .[... i think the units are nmol/L there EDIT: nope the units are ยตmol/L]. healthy people have levels just over 18. i have read about excess symptoms starting up around the 22 mark. my lab says the normal range is 11.5-18.5... don't be fooled by the term "normal" range.
VITAMIN K
here on the forum, thanks to cureorbust, we are starting to pick up on the importance of vitamin K in the d3 balancing act. "high dose" d3 supplementation can interfere with vitamin K. i haven't checked yet on what amounts are needed to deplete K but i'm sure we'll get to it!
yesterday for the first time i saw a bottle of vitamind3 supps in the store, with vit K in it too. one bottle had 100mcg vit K blended with the d, and the other had 120mcg of vit K. sadly i didn't check the amount of d in each pill, but one was a jamieson product so that will be easy to check.
* * *
last of all to touch on antioxidants, the klenner protocol is big on antioxidants like C and E. besides being antioxidants, C helps you use the other nutrients you consume, and E is really important for the health of your blood vessels.
if you haven't already, you may soon read about the focus on vascular concerns in ms. the klenner protocol does not mention this, but it does discuss muscular and liver damage when not enough vit E is present.
VITAMINS C AND E
you can take a couple grams of C per day (klenner suggests up to 10g!), and for the E, the klenner protocol advises 800 IU with each meal. i did this for 3 days with no ill effects, and i don't *normally* take E every day but right now i'm taking 800IU every day.
i've read studies in rats looking at toxicity and they feed them 6000IU vit E per kg body weight every day. so if you decide to go for a short burst of E, i suggest trying to find a bottle of 400IU capsules containing a blend of 4 tocopherols and 4 tocotrienols. you can take 2 with each meal for a week and then back off to one per day. that high dose regimen of 2400 units per day for a week works out to in the neighbourhood of probably 20-40IU/kg/d depending how much you weigh.
whew! holy moly it got late - better split for now take it easy
I have dizziness, brain fog and some girdling pain in my ribcage. Oh and fatigue, how could I forget the fatigue?
After MRIs (non-specific white spots), EEG (slowing of some parts of the brain) and a Nerve Conduction study (carpal tunnel in both hands, nothing else. My Neuro is taking a wait and see position. I am thinking getting a second opinion.
I am interested in supplementation. I have already started vitamin D. My Endo tested me for that and I was very low. Fish Oil makes me sick but I did start on EFAs. I also take B-12 and am thinking of adding Ginko.
Last edited by jimmylegs on Thu Jan 15, 2009 2:09 pm, edited 3 times in total.
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by Dixie_Amazon » Tue Jan 13, 2009 6:32 am
Jimmy Legs, thanks for all the info.
I have a great endo my dermatologist referred me to and he has done lots of blood-work for my Metabolic Syndrome and Hypothyroid (that my PCD swore I didn't have) which included testing for Vit. D. Mine was very low so he prescribed a weekly high dose of D for a while and now I am taking 2000 iu. daily. I have an appointment next week and I will find out what my current levels are. I am sure if I ask him he will test my B12.
I have a great endo my dermatologist referred me to and he has done lots of blood-work for my Metabolic Syndrome and Hypothyroid (that my PCD swore I didn't have) which included testing for Vit. D. Mine was very low so he prescribed a weekly high dose of D for a while and now I am taking 2000 iu. daily. I have an appointment next week and I will find out what my current levels are. I am sure if I ask him he will test my B12.
Dennise
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by notasperfectasyou » Tue Jan 13, 2009 7:04 am
I have also learned that a lot of folks take Neurontin, which is an anti-seizure drug tha thas been found to be an effective nerve pain reliever.
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by jimmylegs » Tue Jan 13, 2009 8:55 am
here is a list of nutrients that are depleted by neurontin (gabapentin). if you consider this drug for pain relief please also consider that it will subdue pain without addressing any potential underlying nutritional causes for pain or other neurological symptoms.
this is from the sleep issues topic
this is from the sleep issues topic
nutrients depleted by gabapentin
-vitamin b6
-vitamin b9(folic)
-vitamin b12
-vitamin d
-vitamin e
-vitamin k
-biotin
-calcium
-L-carnitine
source (includes reference list)
http://www.publix.com/wellness/notes/Di ... n#Dni-Supp
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by Wallwalker » Tue Jan 13, 2009 2:17 pm
This isn't a pain as such but its a major "pain." Restless legs- had all my life but as mobility decreases its gone crazy!!! Have it now despite ropinerole (anti parkinsonian). So tired, can't sleep, read. watch TV..... aagh. Any ideas? So many supplements my urine is used to repair alloy wheels so look elsewhere. Cheers
WW
WW
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by notasperfectasyou » Tue Jan 13, 2009 5:11 pm jimmylegs wrote:here is a list of nutrients that are depleted by neurontin (gabapentin). if you consider this drug for pain relief please also consider that it will subdue pain without addressing any potential underlying nutritional causes for pain or other neurological symptoms.
this is from the sleep issues topicnutrients depleted by gabapentin
-vitamin b6
-vitamin b9(folic)
-vitamin b12
-vitamin d
-vitamin e
-vitamin k
-biotin
-calcium
-L-carnitine
source (includes reference list)
http://www.publix.com/wellness/notes/Di ... n#Dni-Supp
Thanks Jimmylegs. I like to trace these things back to articles. I've done this for Vit-D and will post link tomorrow. The other one I'm interested in is B-12. I'm having trouble tracing that back to a journal. Ken
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by jimmylegs » Tue Jan 13, 2009 7:10 pm
hi napay here's a thready connection between anti-epilectic drugs, bone mineral density, b12, folate, and homocysteine. the abstract doesn't make things very clear.
http://linkinghub.elsevier.com/retrieve ... 1106001737
this one's about AEDs reducing folate in pregnancy...
http://www.theannals.com/cgi/content/abstract/32/7/802
general folate depletion, homocysteine elevation, with AEDs...
http://www.pubmedcentral.nih.gov/articl ... tid=320966
and i'm sure there's that folate-b12 connection out there but i can't find anything just yet
http://linkinghub.elsevier.com/retrieve ... 1106001737
this one's about AEDs reducing folate in pregnancy...
http://www.theannals.com/cgi/content/abstract/32/7/802
general folate depletion, homocysteine elevation, with AEDs...
http://www.pubmedcentral.nih.gov/articl ... tid=320966
and i'm sure there's that folate-b12 connection out there but i can't find anything just yet
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by notasperfectasyou » Tue Jan 13, 2009 7:37 pm
Here's the one I found on Vitamin-D:
Two randomized vitamin D trials in ambulatory patients on anticonvulsants: Impact on bone
"The effects of long-term antiepileptic drug (AED) therapy on bone metabolism are well established and span the spectrum from osteomalacia to osteoporosis and to high bone turnover with normal bone density." ..... "It was recently recommended that patientsshould be treated with an escalating regimen of vitamin D, with doses varying between 400 and 15,000 IU/day, depending on the type of AED induced osteopathy."
Two randomized vitamin D trials in ambulatory patients on anticonvulsants: Impact on bone
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by jimmylegs » Thu Jan 15, 2009 6:05 am
hey napay did you check out the zinc ms boys girls controls thread? i kind of covered it here but added some new info on that thread recently too.
jaded, did you get back on your b-complex and are your feet feeling better?
wallwalker, personally for RLS i would want to have a look at your iron status, but if you don't want to go there... ropinerole apparently depletes potassium. i am scouting for a study to back up that assertion. anyway because of the potential depletion issue, i looked for nutrition links between RLS and potassium and here you go:
http://www.pubmedcentral.nih.gov/articl ... id=1002979
so, hypokalemia, might not hurt to have a look at your potassium status.
lucky for you, potassium supplements are useless since the amounts are usually too small. say you find a 100mg supplement. well you probably need 4000mg per day. so instead of pills you could try pounding lots of banana-filled smoothies and a bunch of swiss chard every day with dinner. good luck!
jaded, did you get back on your b-complex and are your feet feeling better?
wallwalker, personally for RLS i would want to have a look at your iron status, but if you don't want to go there... ropinerole apparently depletes potassium. i am scouting for a study to back up that assertion. anyway because of the potential depletion issue, i looked for nutrition links between RLS and potassium and here you go:
http://www.pubmedcentral.nih.gov/articl ... id=1002979
In a survey of outpatients at the Denver Veterans Affairs Medical Center for common leg symptoms--515 questionnaires returned in a 3-week period--56% reported nocturnal leg cramps, 29% reported the restless leg syndrome, and 49% reported symptoms of peripheral neuropathy. Only 33% of patients had no symptoms relating to their legs. Patients often did not report these symptoms to their physician but were more likely to do so if the symptoms were frequent. Conditions especially related to leg symptoms were hypertension, peripheral vascular disease, coronary artery disease, cerebrovascular disease, kidney disease, and hypokalemia. Most patients did not receive effective therapy for these symptoms.
so, hypokalemia, might not hurt to have a look at your potassium status.
lucky for you, potassium supplements are useless since the amounts are usually too small. say you find a 100mg supplement. well you probably need 4000mg per day. so instead of pills you could try pounding lots of banana-filled smoothies and a bunch of swiss chard every day with dinner. good luck!
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