Hi, I found out through my neuro's secretary that my cat scan on my Thymus was negative. Do any of you not have enlarged thymus glands?Don't get me wrong I am very happy about that. Now I am wondering do I have MG like the doctor said. My first ach test were ok. The only thing he is basing it on now is my repetitive nerve study on my wrist. Could that just be carpal tunnel? Only thing is my left eyelid still droops. Thanks for answering my never ending questions.

Fom what my neuro told me, you can still have MG and not have an enlarged thymus........in fact, Scotscat does have MG, but the docs will not remove her thymus b/c it isn't enlarged either.

My thymus wasn't enlarged, in fact, my surgeon said was "Surpirisingly small and very high up" yet I had mine removed about a month after my diagnosis......Granted, I tested positive for EVERYTHING else for MG - antibodies were @ 600 when I was in the ICU.

I did not have a thymoma. My thymus wasn't big, yet I still have MG.

Hope this helps!
Erin

So they took it out and it wasn't enlarged? Is this something they ususally do with MG? I have been really tired today and I think my droopy eyelid is at its worse, does yours do this too? It seems like when I go outside this sets it off/ Do you know of anyone else that had their thymus taken out and it was not enlarged? I wonder if I am in the begining stages or have I had this for a while? I just wanted to say thanks, you have been so nice.

Hi Barbara,

I had a normal thymus, but my neuro advised it be removed, and I decided to have it removed.

I find bright sunlight, or just being outside in the sun sitting in the shade, can make my eyelids droopy.

Yep. Apparently that is the "status quo" for MG.........Every dr I saw recommended I have mine removed - that it was my last, best chance for remission, do I did it! I was desperate for remission and would have done ANYTHING they suggested!

I thought I had carpal tunnel or RA towards the end, b/c my hands would seize up and my fingers wouldn't bend at all......for a person that makes her living working on the computer it was hell!

When I first found this site, I thought I was one of the few that had their thymus removed - turns out I am one of MANY!

MY eyelids and eyes have been giving me problems recently - I am soooooo glad that it is almost time for another round of IV IG - it gives me an eyelift! LOL

Hang in there and let us all know how you are!

Erin

I am so glad there is a site for this unusual disorder, it sure helps

Hi, I'm not a doctor, just an old hand. Have had MG and been around MGers for a long time. About the thymus: Many MG patients have an enlarged thymus, but not all. Usually when the thymus is enlarged a neuro will recommend a thymectomy. The surgery will often yield positive results. For some this happens within months, for others within years, for some, nothing. Some neuros recommend a thymectomy in any patient who has a postive MG test, either for the ACHR antibody or from the single fiber emg test. Some docs won't do very young patients or very old patients and others do. It depends on the neurologist, the surgeon, and the institution (hospital) where the patient is being followed for MG, and, of course, on what the patient wants. Good luck to you all. I only visit here now and then and find you to be a very nice group of young (mostly) MG folks. Keep up the good work in supporting each other. It can feel very lonely here in MG land.

Hi ya!
As Erin said, I had a normal scan and my neuros (three different doctors in two countries) have all refused to do any surgery - they say it isn't necessary. My blood work all came back positive for MG antibodies (or whatever it is they test for) BUT my repetative nerve test weren't very conclusive. When I was first diagnosed my symptoms were "apparently" quite mild (although they didn't feel mild when I fell down a few flights of stairs when my legs gave out on me)! I have worsened over the years and now am up to moderate on the mg scale.

My eyes are definitely worse when I'm tired and sunny days or flourescent lighting can really bother them. I worked as a manager of GAP when I was first diagnosed (while I was in University) and I would really struggle in the harsh mall lighting - especially at the end of a long shift.

You asked if you have had it for awhile - usually symptoms become prevalent in women between the ages of 20 - 30 (I was bang on 25 when diagnosed, but looking back at photos my eyes had been slightly drooping since about 16). For some reason men seem to show their symptoms later (between 50 and 60). There are some types of MG though which don't follow this pattern and (as with everything) there are exceptions to every rule! Because so much of MG has to do with fatigue of muscles there is a good chance you have had the condition for awhile and have just been attributing your symptoms to other pre-exisiting conditions (e.g. your carpal tunnel) or normal wear and tear! MG is not a condition which progressively gets worse, but it does change. Take me for example - I was okay for the first 3 years of MG, just taking mestinon every 4 hours, then I got worse for whatever reason and now I'm on azathioprine, pred and mestinon every 3 hours. I'm so much stronger now than a year ago and SO grateful everyday!

Hope some of my rambling helps! Take care of yourself!
~Kathy

Hpw are you? Are you feeling OK? How long have you had MG? What were your symptoms? Did you have your thymus removed? What meds are you on?

Sorry to be asking so many questions, but I am still a "newbie" - only 11 months since my diagnosis and am trying to get as much info as possible!

Take care!
Erin

hi... my sister has been diagnosed with MG about a year ago & we were considering various options for her. Apart from Mestinon there are a bunch of Steroids that she has been prescribed... she has been taking these medicines for a year now, she is able to conduct normal routine work but keeps falling ill atleast once in twenty days. Also she has now started getting lot of side effects - she has put on 15 kgs of weight, developing red marks all over the body, pimples on the face etc. We have started considering Thymectomy - so would like to know if it really helped you in the curing process.

Also are you also suffering from any side effects or not???? though I would sincerely hope not.

PLZ reply ASAp as her condition is worsening by the day. Thanks