Wednesday, 20 August 2014

Repost - replies from those that matter

I have just stumbled across this following post that I apparently made in 2012 on MS boards

I am Goodtotalk. but was stopped being able to debate, because I kept being  barred, thats why this blog exists,  interesting replies though very interesting indeed
goodtotalk
06 Jun 2012 at 4:10PM
Hi!
I hope you dont mind me asking,but what do you consider was your trigger that resulted in an ms diagnosis,
Stress
Epstein barr virus- which includes gladular fever, the herpies complex, which includes cold sores,  genital herpes even shingles or chicken pox is related to it.
Perhaps a car accident, which has included a whiplash injury

Anitra
06 Jun 2012 at 4:21PM
I don't consider there was one, sorry.
With hindsight, I think I had it years without realising, but I don't think anything in particular sparked it off.
I didn't find out until after diagnosis that it was already in the family.
So I would just say: "Bad genes".
The processes that led to MS could have begun years before I noticed any symptoms, and certainly years before I was diagnosed.
It could have been a ticking time bomb since conception.
Tina
suestew
06 Jun 2012 at 4:33PM
I believe mine was Optic neuritis when I was 19 (now 44) , was not diagnosed to some years after though. Also around 5 years ago  got undiagnosed and last year after my feet and legs had bad pins and needles got re diagnosed with benign MS.  I do believe my 2nd relapse was brought on by stress.
lals02
06 Jun 2012 at 4:38PM
My symptoms began when I was 12, but it wasn't until my granny died when I was 28 that I got ON and a diagnosis.  My granny died on the Sunday, the ON started on the Tuesday and by the day of the funeral, the Friday, I was completely blind in that eye.  That was when the doctors finally took me seriously and investigated things properly.  My symptoms have been more severe since diagnosis than the ones pre-dx, not sure what might have triggered the pre-dx ones, think it may have been stress from being bullied at school, but I can't really remember.
I agree with Tina - I think that the MS has been present all my life, but it took stress to bring it to the surface.
Luisa x
JellyBean
06 Jun 2012 at 4:40PM
I dont think there was a trigger,I was a happy go lucky mum at age 19,who enjoyed being a mum and aunty to many children,take kids to the beach,the park,bonfires,I was so fit.
At 19 I started to get headaches so bad I cried in pain,with that I got complete numbness all down the left side of my face,pain,and my left side of my face drooped and slurred speach,dizzyness/vertigo..I put this down to taking the female pill so I stopped taking it and the symptoms continued.
Now looking back it apparently was MS symptoms.I went from being fit,running around playing football to what I am today.
So no I didnt have stress,my life was very good,even over the years I still had a darn good life,I worked and done volunteer work.
Nope,sorry there is no trigger and no no one in my family have it and my twin sister is MS free.

Charlie,x
ggmarch
06 Jun 2012 at 4:46PM
I'd put it down to a very stressful time at Uni, that not only led to me having a major eating disorder, once the bad time was over I was habitually so tired I couldn't do course work, clinical work and have a life all at once, I gave up all the activities I used to do (it was not unusual for me to run in the morning, cycle to uni and then swim later in the day), I thne got lots of weird symptoms that just couldn not be diagnosed until finally I put my foot down and said I needed to see a neuro (MS runs in my family), he told me it was likely MS but that I really didnt' need to know as it would look bad on my occ health record, then I finally got in for an MRI and was diagnosed.  I muddled along quite well for years but recently its all got a bit much for me.
whammel
06 Jun 2012 at 5:09PM
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
yawn
06 Jun 2012 at 5:38PM
I had epstein barr whilst at university, also taking exams, thus major headache and stress.

I had weird symptoms like dropping to the floor unexplained, types of fit like symptoms, shakes, weakness, then ON, numbness and major fatigue, then diagnosis.

A great deal of unexplained happenings quite a good few years beforehand but never explained, so I think now Ive had ms for a lot longer pre diagnosis.

With me I would say stressful times probably masked ms symptoms yet in another way highlighted them.  Masked in that I had a lot to deal with, then highlighted when they never left me.  Does that make sense?

bren
x

karenwolff50
06 Jun 2012 at 5:49PM
Hi, I don't think there was a trigger, I was dx aged 50 but looking back I probably had for a few years previously. I did have a very bad case of glandular fever when I was eighteen . Karen
Corkie
06 Jun 2012 at 6:01PM
I believe I have had MS for a very long time but chose to ignore the symptoms as they went away and didn't impact on my life. The year before dx however; I overdid things big time, no longer looked after my health, no longer had time to rest between work and home, My immune system hit rock bottom and was followed by a very bad relapse which eventually affected most of my left side. I had an MRI and was given a dx more or less straight away. I don't know what the original trigger was only that my mum had R/arthritis and I have been told that is my genetic connection. 
Stress over the past 10 years has not helped it.
Wendyxx
Corkie
06 Jun 2012 at 6:01PM
believe I have had MS for a very long time but chose to ignore the symptoms as they went away and didn't impact on my life. The year before dx however; I overdid things big time, no longer looked after my health, no longer had time to rest between work and home, My immune system hit rock bottom and was followed by a very bad relapse which eventually affected most of my left side. I had an MRI and was given a dx more or less straight away. I don't know what the original trigger was only that my mum had R/arthritis and I have been told that is my genetic connection. Epstein Barr virus and vitamin D are also linked to that too.
linseymc
06 Jun 2012 at 6:02PM
hi there, i didnt know i had anything wrong with me until i was 28. but i did have glandular fever when i was 14. and one of my doctors said something along the lines of that being a part of it...so you never know. as i got to 28 and never noticed anything else. x
efb
06 Jun 2012 at 6:03PM
Tetanus injection
pigpen
06 Jun 2012 at 6:19PM
i had bell's palsy when i was 17. then no problems until i was 49.
that year i overdid things big time resulting in my dx a year later.
my auntie had ms in the 1960's.
my neuro nodded to every one of these when i told him but said it only meant that i was more prone to ms.

carole xx
jolo
06 Jun 2012 at 6:20PM
Hi There,
I took quite unwell after I had my wee boy - this was put down to a virus although all the tests for MS were conducted (unknown to me).
One year later the exact same condition returned and I received my diagnosis of MS.
My consultant at the time said it was common for woman to develop symptoms after having a baby???
Jo

Tree65
06 Jun 2012 at 7:06PM
Hi there,
I had glandular fever at 19 when I was at uni and think this may have been what triggered MS.
Teresa xx
linseymc
06 Jun 2012 at 8:24PM
glandular fever is used quite alot in these posts maybe there is something in this..
calIBIZA
06 Jun 2012 at 10:43PM
Stress and heartache
Clare
06 Jun 2012 at 11:06PM
My bloods during the diagnosis process, showed my body had been trying hard to fight a virus. I was unaware I'd had a virus.
Due to extensive lesions, the Neuro said I could have had MS for years but who knows!
Anonymous
07 Jun 2012 at 1:30AM
I do wonder if there was a trigger, meningitis aged 18 months but followed by 23 years in the RAF and 15 vears travelling arounf oil platforms fixing gas turbine generators.
Arrived home with gastric discomfort which was diagnosed as peritonitis ,a bowel resection, followed by 10 weeks off work,was (eventualy) diagnosed as having  PPMS.
Who knows?       
alison100
07 Jun 2012 at 8:55AM
Shingles.  The first MS symptoms turned up in the same place 3 months later.
Alison
x
marty2005
07 Jun 2012 at 9:41AM
Hiya
For me I can point it to Chicken Pox that I got from my nephew when I was 20 years old.  Who knows though?  Was that the trigger' reacting to a certain type of gene that I had?  All I know is that from that point onwards there has been a slow slippery down hill curve with more and more symptoms.  



Marty

sunny girl
07 Jun 2012 at 10:15AM
Mine was after I gave birth to my eldest son 17 years ago he was quite poorly after he was born and spent a few weeks in hospital it was then I developed ON.  Never had any symptons prior to that for me it was definately childbirth and the stress afterwards!
moseleygirl
07 Jun 2012 at 10:30AM
I have always been prone to tonsillitis but in spring 2010 I had suspected glandular fever. I muddled on and a couple of months later had a strange case of pins and needles in my hands and torso which no one took particularly seriously (myself included) so I pretty much ignored it and got used to it. I then had what was diagnosed at the time as labrynthitis (nasty) and had my first clinical relapse in July 2011.
My first relapse coincided with a particularly stressful period in my life. I was dumped in spectacular fashion, a week later I was maid of honour at my mums wedding (part of the job entailing sorting out family disputes) then 2 weeks after that I was at a particularly harsh interview for my dream job. During this interview I lost the use of my right hand side.
Although anything could have triggered the ms to start I believe it was this stressfull period in my life which exacerbated the symptoms and made the relapse really bad.
I was diagnosed as a consequence of this relapse (and the optic neuritis that followed) and today I am going for my 4th tysabri infusion. If nothing else that stressful period led to my unexplained symptoms being explained, I'm on treatment to help and I will have the support of medical professionals for the rest of my life. All in all I'd say it's a good thing that I had to go through that so I could get to where I am today.
Campion
07 Jun 2012 at 12:51PM
This is such an interesting subject - we have discussed it several times ,on this, and the old site. l had a very severe case of shingles - which did take me a long time to get over. Then l became pregnant - and that was the start of my MS symptoms. My MS has been SPMS from the start - and its now 30yrs. l have had shingles three times now - not in the same place. Personally, l believe that vitd3 deficiency was the key - which is why l am always 'plugging it' especially for newbies - and young women thinking of having a baby.
Before MS - l was physically very fit and well - l have never drunk or smoked - can't say l have ever done anything to compromise my health - so nothing to blame it on. l have taken high dose vit d3 for the last 3yrs - as l have osteo- arthritis in my hip/knee/ankle - and l did fall and fractured my ankle - this is my 'good leg' not the ms one - which justs hangs there all floppy. Since taking a highdose vitd3 20.000ius for over 2yrs - now down to 10.000ius my bone-density has improved and my vitd3 levels are higher but still not as high as they should be. When first tested they were rock bottom. Now they are about 98 [ Need to be 175/225]
So its keep taking the tablets and l use a sun-bed occasionally - and try to get as much sunshine as possible.
F.
Moogle star
07 Jun 2012 at 1:52PM
Ok This is just mine: I was born boss eyed (blind, had it corrected) also had epilepsy until I was 11. Always had troubles in school so they all thought I was dyslexic but I was not.
Even as a child I was always tired and not well so I did badly in school because of this.
I had my first real attack when I was 20 but I do feel it has always been there.
Stress and upset seem to help towards with relapses now tho. I guess there is no real answers to MS yet its so complex.
Tibbles
07 Jun 2012 at 2:01PM
Really interesting discussion.
Looking back, I had what could've been the first symptoms from early childhood - very weak bladder, total inability to control urgency. I definitely won't tell you the story of the sink in my bedroom...
I think my first adult relapse/batch of symptoms was triggered by an operation I had in 2005 - was supposed to be a fairly routine op, under general, to remove a large lump of scar tissue (a 10 year old injury) on my hip/buttock. The op was much more complicated than expected and the surgeon had to do an awful lot of digging around. I (and neuro agrees) believe that the trauma to my nervous system during the op triggered what had been lying dormant. My right big toe went numb the day after the op, then over the course of the following months the numbness spread upwards and all the other niggles reared their ugly heads. That was the beginning!
ggood
07 Jun 2012 at 2:22PM

KIMOSABY,

SMALLPOX VACCINATION

GEORGE
marcus1
07 Jun 2012 at 2:28PM
Dear 'goodtotalk',
I went to University, but I was sure that I didn't know what my what 'diagnosis' was? It was (about 39 when I first discovered 'MS' - I'm 56 now) - I 'read' the MS websites but I don't know what 'caused' it ?
Marcus.

debc
07 Jun 2012 at 2:58PM
I'm still in limbo but I was the most energetic child ever then had Glandular Fever aged 15 which left me wiped out for months.
I recovered fully but when I had my 2nd daughter when I was 23 my thyroid stopped working at all. I got over that but then again at probably age 28 I had about 6 weeks of total debilitating fatigue and doc thought I had glandular fever again. My arms were weak and I was pathetic. The blood tests didn't give a reason. I've often had unexplained month long 'extra-tired' times but never so bad as that original one until March 2011. Then, the bloods showed very low lymph and platelets but no explanation.
Then wham, in November, the neurological stuff started big time and I had a full 2 month 'attack' of very MS like symptoms. I've improved hugely since New Year but have never recovered properly: I'm still spazzing, jerking, more tired, buzzing, prickling, twitching, burning, weak, weird feeling skin.
crying1
Rabbit Fan
07 Jun 2012 at 3:26PM
My GP at the time (when I was 17) assumed that I "might have glandular fever" because I was extremely depressed, and I felt totally exhausted - even when I had just got out of bed. I couldn't talk to anyone, and no one else could talk to me. Then I developed optic neuritis, and the party really began!!
                              Best Wishes all,
                                            Moira
 
brenda28
08 Jun 2012 at 11:54AM
I haven't the slightest idea,tbh.
However,I was born and brought up in Scotland.
I do bottle things up A LOT.So stress maybe?
Pure bad luck anyway.I try not to think along the lines of 'why me?'.It's a waste of my time and energy to do so.I've got it and it won't go anyway,no matter what I do.I try and ignore it when I can but I don't fight it.There's no point.
Brenda x
Cat66
08 Jun 2012 at 12:12PM
I got chicken pox when I was 25 and was also having vague dental pains which the dentist couldn't find out what was causing them. I had my first child at 26 and second child at 28, then started feeling giddy,lethargic. Got dx with RRMS at age of 30.
goodtotalk
08 Jun 2012 at 12:33PM
Hi!

I'd like to thank you all for being so candid. its been very enlightening and is very important, to guage an accurate picture of contributing factors. So thank you again.
anu
08 Jun 2012 at 2:43PM
whammel wrote:
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
I'm tending to blame a misaligned atlas, candida and a tank full of goldfish.......
thedamneddontcry
09 Jun 2012 at 11:17AM
whammel wrote:
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
happyWhamel! Wasted Roy Rogers reference, fillystines!

brenda28
08 Jun 2012 at 11:54AM
I haven't the slightest idea,tbh.
However,I was born and brought up in Scotland.
I do bottle things up A LOT.So stress maybe?
Pure bad luck anyway.I try not to think along the lines of 'why me?'.It's a waste of my time and energy to do so.I've got it and it won't go anyway,no matter what I do.I try and ignore it when I can but I don't fight it.There's no point.
Brenda x
Cat66
08 Jun 2012 at 12:12PM
I got chicken pox when I was 25 and was also having vague dental pains which the dentist couldn't find out what was causing them. I had my first child at 26 and second child at 28, then started feeling giddy,lethargic. Got dx with RRMS at age of 30.
goodtotalk
08 Jun 2012 at 12:33PM
Hi!

I'd like to thank you all for being so candid. its been very enlightening and is very important, to guage an accurate picture of contributing factors. So thank you again.
anu
08 Jun 2012 at 2:43PM
whammel wrote:
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
I'm tending to blame a misaligned atlas, candida and a tank full of goldfish.......
thedamneddontcry
09 Jun 2012 at 11:17AM
whammel wrote:
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
happyWhamel! Wasted Roy Rogers reference, fillystines!

brenda28
08 Jun 2012 at 11:54AM
I haven't the slightest idea,tbh.
However,I was born and brought up in Scotland.
I do bottle things up A LOT.So stress maybe?
Pure bad luck anyway.I try not to think along the lines of 'why me?'.It's a waste of my time and energy to do so.I've got it and it won't go anyway,no matter what I do.I try and ignore it when I can but I don't fight it.There's no point.
Brenda x
Cat66
08 Jun 2012 at 12:12PM
I got chicken pox when I was 25 and was also having vague dental pains which the dentist couldn't find out what was causing them. I had my first child at 26 and second child at 28, then started feeling giddy,lethargic. Got dx with RRMS at age of 30.
goodtotalk
08 Jun 2012 at 12:33PM
Hi!

I'd like to thank you all for being so candid. its been very enlightening and is very important, to guage an accurate picture of contributing factors. So thank you again.
anu
08 Jun 2012 at 2:43PM
whammel wrote:
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
I'm tending to blame a misaligned atlas, candida and a tank full of goldfish.......
thedamneddontcry
09 Jun 2012 at 11:17AM
whammel wrote:
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
happyWhamel! Wasted Roy Rogers reference, fillystines!

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