Thanks, Stressed Little Puddytat. It's not helping that my
back is so tight, no matter how I massage or treat it. Haven't had the
heavy head but I can imagine it. I've also had very slight numbness in
my face, just where I had a shooting sensation about two weeks ago. Woo!
and just looking over at the calendar has set off the dizzyhead again.
Mine too! My lower back is so sore and won't ease off and my
neck at the top and to the right is so painful when I'm having a bad
day. So tender to the touch too when rubbing in painkiller gel
And I feel for you with the dizzy head, it's not good. Glad I've been given a bit of a break from that feeling!!
And I feel for you with the dizzy head, it's not good. Glad I've been given a bit of a break from that feeling!!
Well, the bloods have been taken and I was told I can ring on
Tues for my peace of mind but that they will call me if there's
anything interesting. Off for a picnuc in a wooded playground soon so
that should distract me for a bit! No, I'm not going on the zip-wire....
So...I've got most of my results back: Glucose, Iron, B12,
Thyroid, Hormones, Full Blood Count, Kidney and Liver function have all
come back OK. I'm just waiting on the test for Coeliac disease now and
should be able to find out in a couple of days.
I've just been to the GP again after all my blood tests came
back clear and, armed with my Five Worst Symptoms, have come away with
medication to relieve the dizziness, an appointment for a hearing test
and, thankfully, a referral to a neurologist.
He said he could refer me to an ENT specialist at the same time but that there was a chance of each waiting for the other to see to me, thus 'dropping the ball'. He also said it could be a loooong wait. But that feels like a big success for me today.Phew.
He said he could refer me to an ENT specialist at the same time but that there was a chance of each waiting for the other to see to me, thus 'dropping the ball'. He also said it could be a loooong wait. But that feels like a big success for me today.Phew.
31 Aug 2013 at 3:28AM
Just read your posts and I'm so pleased you finally have a
neurologist referral. I can't imagine what it must have been like all
these months. I 'decided' to skip it all by getting hospitalised for my
probable first episode and I'm still here. I wish you well with your
diagnosis whatever it turns out to be.
Thanks Offy, I wish you well. Hope this forum is relieving the boredom of being stuck in hospital!
Has anyone ever reached out to do something, had a momentary
blip, pulled back and then reached out and finished the maneuver? I've
had this a few times, usually in the kitchen when I'm moving things
around. It's like a strange spasm or momentary memory blip. Reach for
the plate, why is my arm out, bring it back, oh yeah, need the plate.
The other thing I've had today (on top of dizziness, tinnitus and twitchy muscles) are stabbing pains, all on my left side. Toe, side of chest and shoulder. Not all at once, they happen so quickly. No wonder I'm tired with all this crazy short-circuiting going on!
The other thing I've had today (on top of dizziness, tinnitus and twitchy muscles) are stabbing pains, all on my left side. Toe, side of chest and shoulder. Not all at once, they happen so quickly. No wonder I'm tired with all this crazy short-circuiting going on!
03 Sep 2013 at 9:51AM
I definitely get the random stabbing pains. I've had them in
my arm/hand so unexpectedly and strongly that I have dropped things.
I also tend to go 'blank' at times and not seem to know what I am doing. This is quite weird and scary, isn't it?
I hope these things settle down for your very soon.
Just a couple of extras to add to the list, huh? xx
I also tend to go 'blank' at times and not seem to know what I am doing. This is quite weird and scary, isn't it?
I hope these things settle down for your very soon.
Just a couple of extras to add to the list, huh? xx
I've just got my neuro appointment through for 25th November.
I feel a weird mixture of relief and nerves. Has anyone got any tips to
prepare for a first neurology appointment? I've no idea how long it
will be and wish to get the most out of it.
16 Sep 2013 at 6:44PM
Glad you've got a date at last. I hope your Neuro is as nice as the one I saw last week.
The only advice I can give is try and relax and answer his questions as fully as you can. I also took the advice of lots of lovely people on here and took a list of symptoms as a memory jogger, and actually referred to it during the appointment. My hubby asked him if he wanted to keep the list at the end of the appointment and he took it willingly. I did say something along the lines of "Gosh, that must make me look like a complete hypochondriac" but he dismissed my comment, saying it was really helpful. As we left the room, he was sat reading the it!
So glad you've got your date at last. I was dreading my appointment, but it turned out to be a very positive experience, and I have already received an appointment for one of the tests he wants me to have - for this coming Saturday, appointment letter dated the day of my appointment (from another hospital, too!). Very impressed, so far!
The only advice I can give is try and relax and answer his questions as fully as you can. I also took the advice of lots of lovely people on here and took a list of symptoms as a memory jogger, and actually referred to it during the appointment. My hubby asked him if he wanted to keep the list at the end of the appointment and he took it willingly. I did say something along the lines of "Gosh, that must make me look like a complete hypochondriac" but he dismissed my comment, saying it was really helpful. As we left the room, he was sat reading the it!
So glad you've got your date at last. I was dreading my appointment, but it turned out to be a very positive experience, and I have already received an appointment for one of the tests he wants me to have - for this coming Saturday, appointment letter dated the day of my appointment (from another hospital, too!). Very impressed, so far!
16 Sep 2013 at 7:49PM
Just read this post from the begining Reikiblosom. How
dreadful for you - the wait must have been agonising. I'm in the same
position really but think I've had the symptoms for over 10 years since
the birth of our fourth child.
About 4 years ago it became too much, googled it and came back with MS - I was working full time in a charity shop which entailed a lot of physical work. Went to the doctors and a subsequent blood test showed elevated liver enzymes and I was diagnosed with autoimmune hepititis - lovely! Became super healthy, only drinking on mine and husbs birthdays, eating all the right foods. But nobody could answer about my tingling legs!! A minor symptom after all. However the bouts of fatigue were and still are horrendous. It felt as if I had the biggest hangover of my life. If somebody put a hundred pounds on the other side of the room I would be unable to get up and collect it.
Add to this a husband who has no empathy whatsoever and here is one very lonely frightened woman. I did think about MS at the time but dismissed it with my liver diagnosis. Then came the headaches and I was really, really lucky to see a new very young GP. He listened very carefully to me and sent me for an MRI scan. This came back as - GO TO SEE A NEUROLOGIST NOW!!!
Then trying to get an appointment was a nightmare. But eventually I managed to find one 25 miles away but within a month. This is now next week away and believe me I will be so happy to be diagnosed. It means I am allowed to be poorly and won't have to be dragged out on a three mile walk (fresh air is good for you).
The moral of my story! It is our body and sometimes we know it better than the medical profession! I do hope you have had some more results. Do let us know!
Sam x
About 4 years ago it became too much, googled it and came back with MS - I was working full time in a charity shop which entailed a lot of physical work. Went to the doctors and a subsequent blood test showed elevated liver enzymes and I was diagnosed with autoimmune hepititis - lovely! Became super healthy, only drinking on mine and husbs birthdays, eating all the right foods. But nobody could answer about my tingling legs!! A minor symptom after all. However the bouts of fatigue were and still are horrendous. It felt as if I had the biggest hangover of my life. If somebody put a hundred pounds on the other side of the room I would be unable to get up and collect it.
Add to this a husband who has no empathy whatsoever and here is one very lonely frightened woman. I did think about MS at the time but dismissed it with my liver diagnosis. Then came the headaches and I was really, really lucky to see a new very young GP. He listened very carefully to me and sent me for an MRI scan. This came back as - GO TO SEE A NEUROLOGIST NOW!!!
Then trying to get an appointment was a nightmare. But eventually I managed to find one 25 miles away but within a month. This is now next week away and believe me I will be so happy to be diagnosed. It means I am allowed to be poorly and won't have to be dragged out on a three mile walk (fresh air is good for you).
The moral of my story! It is our body and sometimes we know it better than the medical profession! I do hope you have had some more results. Do let us know!
Sam x
Purpledot - thankyou for the advice and words of support. I
have my brief symptom list and intend to take copies of my diary for the
neuro to keep.
Sam - it's been an odd long wait. Sometimes I could go for long periods brushing the niggly symptoms under the carpet, but I feel that I've known something wasn't quite right for a long time.
I know what you mean about husbands with no empathy. I'm often in the same boat...though mine does show a little consideration from time to time. He complains less these days when I say I'm tired and stick up for myself by refusing to go to the park in the rain. Him and sprog can get wet, fine. I know I'd regret it later if I went.
I wish you luck with your appointment, though from what I've read on here, don't expect an immediate diagnosis. They will do what they can.
Of course you are 'allowed' to be poorly. Are you someone who can say 'No!' comfortably, or do you need to learn how to do this? I'm getting better at defending my boundaries as I practice saying 'no' (and I get plenty of opportunities ;)
I'll keep you posted. I may go for an eye test soon as something isn't quite right, though my focus is good and I don't need glasses. Occasionally my eyes feel very slightly out of synch with one another.
Take care, all xxx
Sam - it's been an odd long wait. Sometimes I could go for long periods brushing the niggly symptoms under the carpet, but I feel that I've known something wasn't quite right for a long time.
I know what you mean about husbands with no empathy. I'm often in the same boat...though mine does show a little consideration from time to time. He complains less these days when I say I'm tired and stick up for myself by refusing to go to the park in the rain. Him and sprog can get wet, fine. I know I'd regret it later if I went.
I wish you luck with your appointment, though from what I've read on here, don't expect an immediate diagnosis. They will do what they can.
Of course you are 'allowed' to be poorly. Are you someone who can say 'No!' comfortably, or do you need to learn how to do this? I'm getting better at defending my boundaries as I practice saying 'no' (and I get plenty of opportunities ;)
I'll keep you posted. I may go for an eye test soon as something isn't quite right, though my focus is good and I don't need glasses. Occasionally my eyes feel very slightly out of synch with one another.
Take care, all xxx
I went for an eye test today and told the optician about
everything I could think of. Apart from a very slight difference in my
eyes, I don't need glasses. My peripheral vision was checked as that can
pick up neurological problems but that too was fine. And of course, the
side to side wobble didn't happen during the examination.
I mentioned that I had a neuro appointment and from what was said, got the impression they might have referred me anyway.
So, good news. Hearing test up next. Wonder if they'll find anything there?
I mentioned that I had a neuro appointment and from what was said, got the impression they might have referred me anyway.
So, good news. Hearing test up next. Wonder if they'll find anything there?
To add to the fun...suddenly stopped taking the Betahistine
due to a sudden bout of sickness and diarrhoea. I got a callback from
the GP who reassured me it's OK to stay off them until I see my other GP
in a week. I'm not sure they were having an effect anyway. So, I'll see
how dizzy I am when I start eating properly again and can rule out
lightheadedness from lack of food....
Oh, and because of that I've had to postpone the hearing test. It'll get done, eventually.
Went to see my GP again today. He's taken me off the
Betahistine and listened to my latest symptoms. He is quite sure that I
have M.E. / Chronic Fatigue syndrome but I won't get an official
diagnosis until I see the neuro.
A label of M.E. still doesn't feel right to me. In fact, when I went for a shiatsu treatment today, the practioner didn't think I have M.E. either.
What did affect me from my appointment was when my GP referred to it as a disability. He was very good at explaining it and I did feel reassured that he was doing his best to explain my symptoms (even though my gut feeling doesn't agree), but I walked out of there a little upset, now wondering if I am technically disabled?!
I've re-made my hearing test for next week. No further help on how to manage this fatigue and dizziness, so roll on November 25th....
A label of M.E. still doesn't feel right to me. In fact, when I went for a shiatsu treatment today, the practioner didn't think I have M.E. either.
What did affect me from my appointment was when my GP referred to it as a disability. He was very good at explaining it and I did feel reassured that he was doing his best to explain my symptoms (even though my gut feeling doesn't agree), but I walked out of there a little upset, now wondering if I am technically disabled?!
I've re-made my hearing test for next week. No further help on how to manage this fatigue and dizziness, so roll on November 25th....
11 Oct 2013 at 3:06PM
Hi Reiki
I have a longstanding diagnosis of ME/CFS, but, like you, have never completely agreed with it. I also have a diagnosis of Fibromyalgia to add to it, but don't really have complete faith in that either as I don't suffer the chronic, debilitating pain that is supposed to be its defining symptom.
I can totally understand your reaction to your GP suddenly referring to your 'disability', as this is not a word anyone wants to hear in relation to their own health.
On the plus side, if it does turn out to be what he thinks, at least your GP seems to understand it, and believe in it. You'd be surprised how many don't!
When I saw a Neuro a few weeks ago and told him of my ME diagnosis, I told him straight that I had never been 100% convinced of its accuracy, and, although he didn't make any direct comments, he nodded wisely (!), didn't argue with me and moved on very swiftly to something else. I was half expecting him to terminate the consultation there and then, declaring that everything could be explained by the ME and that there was nothing they could do to help me. The fact that he didn't was a revelation (and a first) for me!
Although my long journey through Limboland may end up back at that ME/CFS / Fibro diagnosis, I am now determined not to be dismissed until all other avenues have been explored, and refuse for the first time in over 25 years to be fobbed off.
Reiki - it may well be that you will end up with confirmation of your GP's diagnosis, but please make sure all other possibilities have been thorougly explored first..........a diagnosis of ME/CFS is often referred to as a 'lazy' diagnosis, so don't be fobbed off!
In the meantime, it is just a label, so nothing as changed since before you saw your GP. Please take care xx
I have a longstanding diagnosis of ME/CFS, but, like you, have never completely agreed with it. I also have a diagnosis of Fibromyalgia to add to it, but don't really have complete faith in that either as I don't suffer the chronic, debilitating pain that is supposed to be its defining symptom.
I can totally understand your reaction to your GP suddenly referring to your 'disability', as this is not a word anyone wants to hear in relation to their own health.
On the plus side, if it does turn out to be what he thinks, at least your GP seems to understand it, and believe in it. You'd be surprised how many don't!
When I saw a Neuro a few weeks ago and told him of my ME diagnosis, I told him straight that I had never been 100% convinced of its accuracy, and, although he didn't make any direct comments, he nodded wisely (!), didn't argue with me and moved on very swiftly to something else. I was half expecting him to terminate the consultation there and then, declaring that everything could be explained by the ME and that there was nothing they could do to help me. The fact that he didn't was a revelation (and a first) for me!
Although my long journey through Limboland may end up back at that ME/CFS / Fibro diagnosis, I am now determined not to be dismissed until all other avenues have been explored, and refuse for the first time in over 25 years to be fobbed off.
Reiki - it may well be that you will end up with confirmation of your GP's diagnosis, but please make sure all other possibilities have been thorougly explored first..........a diagnosis of ME/CFS is often referred to as a 'lazy' diagnosis, so don't be fobbed off!
In the meantime, it is just a label, so nothing as changed since before you saw your GP. Please take care xx
Thanks, Purpledot. My shiatsu practitioner (who is also my
Tai Chi teacher and someone with a great deal of experience) also said
to me that if I'm given a label of M.E. or fibromyalgia, to ignore it.
I'm certainly not accepting it. The GP said it was 'a diagnosis of
exclusion', which just sounds like a label they use when they can't find
proof of what is wrong.
I'm beginning to think that M.E., fibromyalgia and ms are dis-eases that border on the edge of our current understanding if the human body as just a physical, biomechanical machine. However, if you take a holistic perspective, you start talking about the energy bodies in addition to the physical.
In my personal experience, right now, I feel like parts of me are trying to go in different directions. Emotions and thoughts and beliefs and habits and intuitions are all pulling in different directions with my physical body struggling to cope with the confusion. I wouldn't be surprised to find that I've short-circuited my nerves and created lesions. I'm not surprised, really, that I seem to be chronically dizzy....I'm still spinning mentally and emotionally after the past five (at least five) years of childbirth, sudden hysterectomy, near marriage breakup, starting two small businesses and discovering that I've been bisexual all along. Yes, its been a busy half-decade.
No wonder I feel broken, even though I love motherhood, I'm happy with just one child, my marriage is better than it has been in years, I absolutely love my work and I am less embarrased about admitting to fancying certain actresses lol ;)
So I'm firmly set upon this journey now. All I can do is keep asking questions until I get the answers I need and keep asking for help as and when I need it.
I value your responses. I know I'm not alone ♡
I'm beginning to think that M.E., fibromyalgia and ms are dis-eases that border on the edge of our current understanding if the human body as just a physical, biomechanical machine. However, if you take a holistic perspective, you start talking about the energy bodies in addition to the physical.
In my personal experience, right now, I feel like parts of me are trying to go in different directions. Emotions and thoughts and beliefs and habits and intuitions are all pulling in different directions with my physical body struggling to cope with the confusion. I wouldn't be surprised to find that I've short-circuited my nerves and created lesions. I'm not surprised, really, that I seem to be chronically dizzy....I'm still spinning mentally and emotionally after the past five (at least five) years of childbirth, sudden hysterectomy, near marriage breakup, starting two small businesses and discovering that I've been bisexual all along. Yes, its been a busy half-decade.
No wonder I feel broken, even though I love motherhood, I'm happy with just one child, my marriage is better than it has been in years, I absolutely love my work and I am less embarrased about admitting to fancying certain actresses lol ;)
So I'm firmly set upon this journey now. All I can do is keep asking questions until I get the answers I need and keep asking for help as and when I need it.
I value your responses. I know I'm not alone ♡
11 Oct 2013 at 8:44PM
I am not sure how professional it is for a shiatsu / tai chi
teacher to tell clients to 'ignore' diagnoses made by a neurologist?
Anonymous, usually I'd agree but under the circumstances, I
know this person very well and I was being addressed on a personal
level. Sometimes a label can interfere with healing and in this
instance, both of us felt that M.E. is not what I'm dealing with. If you
understand the metaphysical idea that thought creates reality, you'll
get where I'm coming from.
On the other hand, I'm well aware that being quite convinced that what I have is ms, I'm possibly not helping myself. At this point though, I need an answer that fits. Like many on here, I am trying to understand and deal with the experience that my wayward body is giving me.
My point of view on life is an ever widening one and I don't expect everyone here to agree. Medical science, in my opinion, only has part of the answer. My personal journey is very much about self-discovery alongside seeking a medical diagnosis. I would never choose holistic therapy over allopathic (conventional medicine) methods but will always consider complementary therapies alongside treatment from medical professionals.
On the other hand, I'm well aware that being quite convinced that what I have is ms, I'm possibly not helping myself. At this point though, I need an answer that fits. Like many on here, I am trying to understand and deal with the experience that my wayward body is giving me.
My point of view on life is an ever widening one and I don't expect everyone here to agree. Medical science, in my opinion, only has part of the answer. My personal journey is very much about self-discovery alongside seeking a medical diagnosis. I would never choose holistic therapy over allopathic (conventional medicine) methods but will always consider complementary therapies alongside treatment from medical professionals.
Today's fun new symptom: a twitchy chin. It started when I
tilted my head down to my chest for some reason, then stopped after a
little while. A bit later it did the same again so I deliberately
experimented and found that that position plus moving my chin keeps
setting it off! An annoying tic but it does seem to go away by itself.
18 Oct 2013 at 3:15PM
Hi
Just read all you messages what a long process you have had.
il just tell you a it about me, 5 years ago I started getting really dizzy, vertigo, nausea, balance problems migraines, headachs etc. after being referred to ENT, physio and then a neuro-otologist, having 101 dizzy tests that were horrible I was told I had MAV which is migraine associated vertigo and peripheral vestibular hypofunction. Was on betahistine and stemital and had physio, dietician, allergy clinic and after 2 years was discharged as nothing else they can do. But was still getting symptoms daily. Then in 2010 I had a car cash n after a year of pain, fatigue, aches, memory problems, word mix up, weak muscles and more, I saw a rheumy and after MRI, ct, X-ray, nerve test was told I had fibromyalgia, discharged again as nothing they can do. So now 3 years later symptoms got worse n lots more appearing and doc just giving me more n more meds I have now been referred to a neuro. But that's only after 3 weeks ago of getting blurry vision, seeing optician, being told I have optic nerve swelling, seeng eye clinic the next day, going AnE as high blood pressure too, having urgent brain MRI the next day n no tumours, blood clots found. I have finally been refuted to neuro n my apt is in less than 3 weeks. It's bad how we have to force our doctors to do anything n we are just left to live with our symptoms, I really hope you get some answers once you see neuro.
Victoria x
Just read all you messages what a long process you have had.
il just tell you a it about me, 5 years ago I started getting really dizzy, vertigo, nausea, balance problems migraines, headachs etc. after being referred to ENT, physio and then a neuro-otologist, having 101 dizzy tests that were horrible I was told I had MAV which is migraine associated vertigo and peripheral vestibular hypofunction. Was on betahistine and stemital and had physio, dietician, allergy clinic and after 2 years was discharged as nothing else they can do. But was still getting symptoms daily. Then in 2010 I had a car cash n after a year of pain, fatigue, aches, memory problems, word mix up, weak muscles and more, I saw a rheumy and after MRI, ct, X-ray, nerve test was told I had fibromyalgia, discharged again as nothing they can do. So now 3 years later symptoms got worse n lots more appearing and doc just giving me more n more meds I have now been referred to a neuro. But that's only after 3 weeks ago of getting blurry vision, seeing optician, being told I have optic nerve swelling, seeng eye clinic the next day, going AnE as high blood pressure too, having urgent brain MRI the next day n no tumours, blood clots found. I have finally been refuted to neuro n my apt is in less than 3 weeks. It's bad how we have to force our doctors to do anything n we are just left to live with our symptoms, I really hope you get some answers once you see neuro.
Victoria x
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