[Bebo]

Hi folks,

I am 33 years old, and a new member to this group, which looks like having more experience than doctors here in my country. My symptoms confirm MG, the onset symptoms started 4 months ago, including ptosis and double vision. I did CT and MRI on brain and orbits, Acetylcholine receptor antibodies and thyroid functions, and all the reports came out normal. Unfourteny, my symptoms (ptosis and double vision) are getting worse. I am waiting now for CT chest for thymus gland.
Please let me know if i need to do any other tests???.
Meanwhile, as you know MG is not very common and not known, I will be very grateful if you recommend a specialized centre or Lab for MG diagnosis or treatment anywhere in the world where I can complete my tests.

Another question...Is it possible that my Acetylcholine receptor antibody test turn to be postive after awhile!??

[Lily7]

Hello Bebo, I hope that soon others will reply to you with more information. I am new to MG so I do not have much to offer you.
What I did learn is that all the testing that was done for me was normal or negative until we got to the final test -- a Single Fiber EMG or SFEMG. For me this was positive and I was classified as "seronegative MG". It doesn't necessarily mean you are any better off health wise, there can be just as many problems if the blood tests are positive or negative. My neurologist says there are things going on in MG that just can't be tested but they are there.
I don't know where you are in the world but there are not too many places that have doctors trained in SFEMG. And as with any test you will want it done by a doctor who is very skilled and experienced so there is no chance for false results.
I hope that this information is helpful.

[neutro]

Hi Bebo,
Could you tell us in which country you are.
I will try to get locations of MG centers, if any...
Are you under the supervison of a neurologist?
Maurice.

[Bebo]

Thank you guys for ur response...

I visited alot of doctors and I can see that they can not handle the case.I live in Egypt (Cairo). Unfourtently no one heared about MG in the circle where I am ( friends and family)..On my last visit to one of the doctor, he did the ice test and asked me for Acetylcholine receptor antibody test and CT on thymus gland, at this moment i was really happy because this was the first doctor I found who understand what is he doing. ""However I believe there are many other test should be requested"" (like single fiber EMG )..
The test came out to be negative and I will visit him tomorrow and ask about his plan about my case..
But to be honest, I think it will be better to complete the rest of the diagnosis in a specialized centre..

[neutro]

Hi Bebo,
I found several references about papers on MG published by a Neurologic and Psychiatric department of a University Hospital in Assiut, for example:
http://www.nnjournal.net/article.asp...6;aulast=Hamed
nothing in Cairo...
Good luck to you!
Maurice.

[Bebo]

Thanks Maurice for your help and ur search..

Currently I am looking to travel to Germany at least to do the diagnosis.

I am in contact with Gottingen university hospital neurology..Do you know anything about it!?

Thanks again

[AnnieB3]

Bebo, Okay, you live in Cairo. Can they send the MuSK antibody test to the US to be done? A negative AChR test doesn't mean that you don't have MG, or LEMS (Lambert-Eaton Myasthenic Syndrome) or a CMS (congenital myasthenic syndrome).

Antibody tests can be negative at first and positive later on in the disease process. The antibodies might be too busy attacking the tissues (tissue bound) for them to circulate!

Here's a great source of information—for your doctors, too.

http://neuromuscular.wustl.edu/synmg.html

Traveling is not advised if you have MG and it is not stable. Have they checked your oxygen saturation (O2)? Your breathing with pulmonary function tests? A person's O2 can drop much lower while on a plane. And traveling causes a lot of stress on MG, making people weaker.

France has a great MG/CMS institute.

http://www.institut-myologie.org/en/

Dr. Bruno Eymard is the doctor to see.

Let us know how you're doing!

Annie

[Bebo]

I am in Germany now, for a work trip ...and found it a good chance to do some invesrigations..

Thank you very much..

I will keep you updated

[Bebo]

In Germany, still all my blood tests are negative to MG..but all physical symptoms (double vision and ptosis) confirm MG..The neuro prescribed mestinon for a week and there was no any improvment, during my visit to him after that week, in addation to mestinon he put me on prednisone 20mg/ day for a week then increasing to 40 mg/day for a week and then 80 mg/day for 4 weeks.. However when I feel an improvment at any conc, I should maintaine this conc..I should be visiting him again after 6 weeks..
Is that plan sounds okk!??

[neutro]

Hi Bebo,
Ocular MG doesn't usually respond to Mestinon and is normally treated with Prednisone. The plan which is proposed to you seems OK but what concerns me is that you haven' been diagnosed with MG and that you are treated with Pred which is no innocent drug and which has serious side effects.
It seems to me that it is a pity that you haven't been submitted to a simple test called Tensilon to confirm MG.
I advised you in one other post of yours to consult "Useful Sites for Myasthenia Gravis". I indicated a link, the one before last, for MG treatments, their quickness of action and side effets.
Maurice.