I am having voice problem( ENT told : muscle tension dysphonia) , blurred vission ( left eye only - at times I feel my eye is very heavy) and neck muscle tightness and weakness in my right arm and leg and generalized fatigue. I am getting neck muscle tightness when I expose to cold , hot, long walk , etc. ( unable to cook , unable to do normal house work, )
At times I am able to talk with reasonable quality voice, but I have to put extra effort to get the voice out

But the MRI was normal, EMG was normal, s ingle fibre studies are normal and CT scan was normal . Therefore the conclusion was no MG.

Neck X-Ray: loss of the normal cervical lordosis

I have hypothyrodism and Vitiligo.

I have elevated Acetylcholine receptor antibody ( 0.53nmol). Reflexes are absent in the lower limb.At times my neck is sticking out due to muscle tightness. If I force the muscle to release, it getting worst. If I let it loose, I am getting relief slowly. I am so puzzeld with out having a dignosis for the symptoms. One docotor said to me all these things due to stress, but other one said could be some neurological issue.

I am puzzeled. sick and tired of seeing doctors

Any advice or help would be greatly appreciated!!

Hi Kumar,

firstly welcome to the board.

Your story sounds so familiar to so many of us with MG. We see dr after dr, one says one thing one says another, but none have any idea what the problem is! all very frustrating.

I would have thought a elevated AChR antibodies would have been enough to diagnose you?

When my MG is playing up, my neck muscles usually get tight, I put this down to the muscles trying to do more work than normal, and other muscles overcompensating. I find myself holding my head with my hand when Im feeling particularly weak.

I certainly stuggle to keep up with normal house hold stuff, and keep easy to cook meals for when I don't have the strength to cook.

Hope you get some answers soon, and feel free to keep asking as many question as you need to, its a great place to get information, get answers and loads of support
take care
redtail

Hello and welcome to Neurotalk! You are going to meet some really amazing people on this site!

I know b/4 I found it, I was scared and angry all the time........

Redtail was right! Lots of us have to suffer needlessly b/4 we are properly diganosed - in my case, it took a full blown crisis before I was able to get the help I needed......sad but true!

I too saw lots of docs with no real results.......I truly thought I was losing my mind and was actually relieved when I first was diagnosed........

Keep being your own advocate - ask for 2, 3, 4 opinions........lots of docs look for the obvious things and skip over MG..........

I was positive for every test given for MG so I was able to get my meds pretty quickly, but everyone is so different - they don;t call this the "snow flake disease" for nothing........

Until then, try and take it ez, rest lots and let your docs know what is going on.........

My prayers are with you!

Erin

I am no doctor, but from my personal experience I absolutely do not agree that you do not have MG. I myself have defied the EMG, and Single Fiber EMG and the only thing I have is an elevated Acetylcholine receptor antibody (0.46). My doctor worked at the Mayo Clinic and worked with Dr. Lambert (Lambert-Eaton Syndrome) and told me that he has seen cases like mine. I started with an ENT as well since I had problems with my throat and swallowing. Then slurred speech that no one else seemed to notice that much. I went through that for 1 year before the third neuro took my symptoms into account and tested me for MG. I tested twice for this at two different labs to be safe. I went to Mayo for the single-fiber EMG and to the Cleveland Clinic in Miami to get a second opinion. They all agreed that this was the correct diagnoses but the Mayo wasn't sold because I didn't get weak quick enough. Well that was 4 months ago and now I am a lot weaker. I just started having so vision issues a couple of days ago. I just want to let you know that it sound like it may be only presenting bulbar symptoms at this time. My doctor is satisfied with this diagnoses as I was because I was tired of doctors telling me it was in my head and it was anxiety. I saw around 15 doctors before I found an answer. Through persistence I found an answer to the problem. You know your body better then any doctor. Just find the right one who is willing to take you serious. Good Luck and I hope this helps.
-Eddie 22 Male
DX October 2008
symptoms started Sept 2007

Thanks for your input. Since Jan15/2008 , I am experiencing ache and pain in my right side and also I am having droopy eye(left eye only). I thought I might having some sinus infection and went to an emergency , they are just suspecting it could be MG. Again I have to run around with doctors. I am realy fed up with doctors approch here. It seems to me ,most of the doctors are not familier with MG. I am living in Toronto, Canada. If any one can suggest whom I can get help to resolve this puzzle.

Kumar,

I hope you get your diagnosis soon and get the right meds! Then you'll feel like a million bucks!!!!!

Hang in there!

Erin

My symptoms started with something as simple as a droopy eyelid or two that I could not control. From there, they tried to rule out ministrokes, MS, and anything else, even tho they said I was classic for MG.

They took spinal fluid and bloodwork. When I told them I had previous thyroid problems, they grabbed an ice pack, fatigued my eyelids, made them droop, put the ice pack on them, and they revived. They wanted to make sure they weren't giving me a false diagnosis of MG, so they looked for 3 more days at the hospital to make it anything else, and it wasn't.

MG and Mestinon it is. I don't know much about this at all, except it seems things can be alot worse than I have it... and my only trouble was some double vision over the last month or so, until the eyelids dropped down on me.

I don't know if this is any help to the OP or not, but I hope it helps someone. I couldn't believe what droopy eyelids could amount to. I'm still kind of in shock.

God bless, wishing you the best day possible.

Just wanted to check up on you and see how you are!

A spinal tap? You had a spinal tap? Yikes! Can't even imagine! How did you get through that? Morphine? How did they fatigue your eyelids?

You sound like you have a fascinating story!

How old are you? Do you have children? A support group? This place has been amazing for me! Everyone is so kind!

Are you on any other meds? Are you weak? I'd love to hear more about you when you have time!


Erin

I am taking 60mg x5 mestinin since Mar09/09. I am seeing lot of different with mestinon with respect to Droopy eye and voice issues . My SFEMG is normal but Achr is elevated. neurologist said to me they are unable to confirm a diagnosis of MG.

Currently Iam experiencing unexplained muscle problem in my shoulder, rib, along spine. Unable to sleep at night. So frustrated.

NCS shows : abscence of H reflexes
Neurological examination: reflexes are abscent in the lower limb & temperature is blunted to wrist and ankles

Few blood works and LS SPine MRI been ordered. waitning for results.