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230948 tn?1235844329

any ideas??

uk2
Hi

I posted on here a well with sx and the girl thought on here maybe i have MG which i am waiting to find out as i am seeing a neurologist up in london.

The trouble is i have such a vast amount of sx its confusing cause i have been told i have fibromyalgia as well by one dr though 5 say its not and my GP insists its not hence the constant referals.

The sx i put to fibro are stabbing nerve pain in my left or right legs, a flu like ache in my body and a pain condition which i suffered from since 15 (now 34) after a horse riding accident and then later whip lash through a car accident that is in my neck and shoulder.

But the last yr i have had other sx drooping heavy eyes on occasion cant keep them open light and noise sensitive ringing in my ears. fatiuge in my legs and arms that gets worse with exercise and better with rest,weak voice as the day goes on and differcultie swallowing. Some of these sx like the swallowing and weak voice are there every day but the limb weakness and burning and aching only is there when very bad in flares though when its there it can last an hour or go on a few days even mths when very bad.I think this is MG??

But i also have a numb patch on my hip/buttocks that is the size of a dinner plate numb but hyper sensitive around the edge of the numb patch and cant be laid on clothes hurt it!! i'm tolf this is not typical of fibro or MG could this be anbother problem or are all these sx actually apart of a complex autoimmune disorder and instead of going to neuro's oi should be going to immunist??  or someone else??

I also have rhynards sydrome and am sun sensitive and have digestive issues.

another thing i have noticed before i go down with the fatiuged muscles and burning in my body is i yawn alot i know odd then i burn from my trunk outward and it spreads slowly to my limbs and eventually i get so bad i cant keep my head up i have to immediatly lay down

any ideas this is awfull i am a singal mum with 3 kids and this has been going on since 2007.

sam
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230948 tn?1235844329
uk2
Hi Wanna,

i went to see my GP not sure what you call them in America primary care physian maybe? they are the ones you see for normal thing like clods and blood test she has refered me to a dr kullman who has writtian studies on autoimmune and channelpathies and is a neuromuscular specialist so i am hoping i will get some answers soon.

The gp gave me some anti-inflams for my back and it is helping with the other pain in my body which is odd.

So with your condition you are positive for 3 auto immune conditions that must be tough i guess your ana was high? its so complicated this autoimmune stuff i am dizzy with thinking what it could be and just want my life back. Anyway in the mean while i will carry on with hydro and wait for y appointment.

Thank you for all your replys you have been a real friend.

sam
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Avatar universal
oops!!!!  Once of my cats decided to help me out a bit!    

I'll continue...without the feline assistance...

...he believes I have inflammation around my nerves and that causes the sensations.  

It would be a good idea to be evaluated by a doctor who is well versed in autoimmune disease...who was it you saw yesterday?

(((HUGS)))
Wanna :o)
Helpful - 0
Avatar universal
Sam,

Please do not feel like you are moaning!!!  You are in an awful place with your health and you desperately need answers which will lead to some relief.

I had most of your symptoms with the exception of the yawning and skin blisters.  When you mentioned the hair brushing, I remembered how that used to feel, not to have the energy or strength to brush my own hair.

Once I asked my rheumy about all the numbness and tingling I have, why it roams around and what he thought it was.  He explained that with autoimmune disease there can be inflamation everywhere and eh believes I have inflamtion
Helpful - 0
230948 tn?1235844329
uk2
Hi Wanna

You have an amazing dr who is willing to look out of the box i pray i find one like that!! were  your ana positive? i wanted more blood tests down today but put my back out at weekend so when i got in to the drs i was in so much pain i had forgotten what to ask??

My husband came with me who i am separated from as he was worried about me plus i could not drive, i was in tears last night i am at the end really to be honest wanna but i still have hope that somebody will help.

The dr was a different one today and was very nice if not abit confused  by my sx, as my skin is so pigmantated he mentioned adisions prob spelling that wrong but have goolged and the sx dont match he said they didnt either, he did tell me though that the large numb patch on my left side was not from the slipped disk in my back i had done at the weekend as it was the wrong path way? and it had been there for 2 mths so i'm none the wiser why that is there my left leg is getting so weak now too still the referal gone through so hopefully i'll get to see this new consultant in july in his clinic in london.

My sx are so varied, i am sun sensitive(pigmantate and blsier plus feel ill if i spend too long in sun)
have had bouts of mouth ulcers
rash over my cheeks and nose with slightly thicken skin-not there at mo though
nerve type pain on my flank/hip was right now left
numb patch hip/buttock
excessive yawning-specially before a flare
burning muscles
weakness in limbs
weak voice as day goes on
trouble swallowing
fatiuge muscle-cant lift to brush hair or get out of chair cant do stairs
heavy eyes drooping eye lids/sensitive to light
ringing in my ears
vertigo
stomach problems

out of all the nerve pain is the worst but also the flares i get are awful i start to yawn constently and i know a flare is coming then my muscles in my stomach start to burn this then goes out to my limbs and then my neck and i have to lay down its an awful feeling, laying down helps but sometimes it carries on for days and weeks with a feeling of i have to keep moving but i cant as my muscles are so fatiuged and heavy i dont want  to eat i cant function at any level its awful i had 5 bouts of these between 2007 and 2008 but since 2009 i get them weekly and lasting from a few hrs too mths. If you have any ideas wanna or know someone who might i am so fed up,anyway sorry for moaning.

sam
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Avatar universal
Hi Sam,

UCTD is not really rare.  The diagnosis is preferred my by doctor so he could use a variety of treatments without a squawk from my insurance company.  What he sees are Sjogren's, Lupus (SLE), and Polymyositis.  He has to keep tweaking my medications.

I still have flares, am currently recovering from one, but a flare is nothing compared to how life used to be before treatment!!!  We are now at the point of what can give me the best quality of life...what symptoms can I tolerate and what symptoms are too much from day to day.

I hope you get into the new doctor soon!  And this time I hope you get some real answers and get to feeling better.

((HUGS))
Wanna :o)
Helpful - 0
230948 tn?1235844329
uk2
wanna

The dr wrote the referal for neuro about 2 weeks ago so i am hoping to here so,she thinks it's past general neurology so wants me to see a neuromuscular specailist and he deals in some autoimmune disorders so hopefully i'll get some answers.

I've never heard of what you have is it rare?? so glad your sorted and getting treatment.

sam xx
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Avatar universal
Hi Sam,

My diagnosis is Undifferentiated Connective Tissue Disease, and my rheumy believes I have overlapping diseases.  My treatment is going well, some setbacks, but it is much better than I once felt!  I take it day by day and enjoy everything that I can.

From start to finish it took me about 8-9 years to get a diagnosis.  My first symptoms were severe fatigue and muscle weakness, which would come and go.  Years went by with no answers until my blood work was so out of whack (looong story), a boatload of symptoms, saw several doctors, and functioning through daily life was almost impossible.  The rheumy I was seeing was so confused by my results he sent me to a rheumy at the CC, who finally sorted things out.

When is your neurologist appointment?  Hope HE can provide you with some answers and direction.  You need to start feeling better and get your life back!

(((HUGS)))
Wanna :o)
Helpful - 0
230948 tn?1235844329
uk2
Hi wanna how r u?

Yes i have been to one nhs rheumy who said i did not have fibromyalgia and then a private rheumy who said i did? i now see the last rheumy on the NHS but only once a yr as he is so busy.

I cant remember are you dx with anything? and if so how long did it take them.

sam xx
Helpful - 0
Avatar universal
Hi Sam,

Just say hello and hoping you find some answers soon.  You have been through a lot these past years.

I forget if you have been to a rheumatologist?  

Wishing you a good day!

((((HUGS))))
Wanna :o)
Helpful - 0
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