Question about MG
 

Hi,
I am new to this site and new to MG.
When I was 20 I was diagnosed with Sjögrens Syndrome, and when 23 with Systemic Lupus (SLE). All the years I've had times where I had trouble walking but I always thought it had something to do with SS or SLE.

The last year, how ever, it's been increasingly worse. Now I can only walk 5-10 min. and then my legs start to get weak. It gets worse and worse and after 5-15 min. more, I can hardly move my feet. It's like the message from the brain just doesn't get to the legs. Sometimes I have it in my arms too - then I can't even lift a cup of tea. One time I even experienced I couldn't talk - I wanted to but my mouth just couldn't form any sounds.

I was tested 'slightly positive' for MG recently but they say that my symptoms are not the common ones so they want me tested in all sorts of ways (MR-scan, testing of the nerves and maybe a muscle biopsy). How ever there is a long waiting time for these examinations and meanwhile I don't know what to do with all these thoughts.

Among the 'not-normal' symptoms is that I can wake up from sleep and have the muscle weakness. Apparently it should go away after rest. Maybe it could be because both Sjögren's Syndrome and Lupus gives chronic fatigue, so I am never rested? I don't have double vision or anything with speech other than the one time where I just couldn't say a thing.

So - can it be MG anyway or was the bloodtest just wrong? If it is MG will I develop the facial symptoms over time, or is it only some people who has that? I am sorry for spamming you all with so many questions, but I really don't know what to think about this. :icon_eek:

If the test showed "mildly positive" then you have MG. The docs telling you that your symptoms aren't "right" just shows they are not well versed in MG. You have CLASSIC symptoms. I commonly wake up with all the symptoms in full force. That just means you are VERY symptomatic.

Find a new doctor, have your blood results copied for you to take along with you.

Good luck,

Missy

Unfortunately I can't get a new doctor. I live in Denmark, Europe, and it's a very small country with only a total of 5 mill inhabitants. There is only 37 cases of MG a year I read. My doctor is at the biggest university hospital, so I won't be able to find anyone better. It's the place where people with rare illnesses from all over the country gets send to.

How ever your answer can help me a lot next time I talk to her. It's hard to ask the right questions (and question the replies) when you have no clue of what is going on. So thanks a lot!

I have also had "midly" abnormal test results --modulating Abs of 24, with 20 being the upper limits of normal, and a SFEMG in which a few fibers were abnormal. My local doc says he is not convinced it is MG, despite the fact I take Mestinon (which helps alot) and get IVIG every 3 weeks.

Fortunately I'm going to get another opinion (although at this point I'm not holding my breath).

Have they at least tried you on Mestinon? With your other autoimmune diseases, are you on prednisone or other immunosuppressant?

I know it really sucks being told that they don't know what is wrong...and consequently do nothing to help.

Hang in there:)

I'm sorry to hear that your doctor is not convinced. I hope the other doctor will be able to give you a diagnosis - even though it's a horrible one to get, it's better than having no name for it. At least before my first diagnosis I almost began to think it was all in my head.

I haven't tried Mestinon. I still wait for further examinations to confirm the blood test. I used to get prednisone, but last time I got it, I had so many side effects, that I decided to wean out of it. I might have to go back, but I really really don't hope so. :icon_eek: