Diagnosis or not? And medication?
 

Hi Everyone,

After having an MRI, 2 CT's, and numerous blood tests, I still do not have any concrete answers. Although I have tested negative for MG, my neurologist said that my droopy eye is the very first symptom of MG so she has put me on Pyridostigmine which I am starting today. She wants me to take this medication for 2 weeks to see if my eye improves. She feels that it is still possible that I may have MG, but still tested negative because I am in the early stages. To me, it feels like they are grasping at straws. Has anyone else tested negative and then it turned out they had it, or gone through a similar situation?

Hi, and welcome. It's quite common to have a negative blood test for MG, especially in the beginning--and especially if only your eyelid is affected. Many of us here who have been diagnosed with MG have never had a positive blood test (myself included). Also, in addition to the most common antibody (AChR-antibodies) there are others you can be tested for, but probably haven't, like MuSK antibodies.

There's a much more sensitive test for MG, called a single-fiber EMG. Many of us whose blood tests are negative were diagnosed by SFEMG.

You should also know that pyridostigmine (around here we usually call it Mestinon, which is actually the brand name) is sometimes not effective for ocular MG. So if you take it and it doesn't work, that's not evidence, in itself, that you don't have MG. On the other hand, if it makes a very noticeable difference, that's strongly suggestive of MG. Mestinon has a very short half-life. For most people, the effects wear off in four hours. So if you eyelid perks up half an hour after you take the pill, but droops again after three hours, that should make you think it's the Mestinon that's causing the improvement.

I highly recommend finding a neuro-ophthalmologist. Those guys really understand MG.

Abby

Reply to Abby
 

Thank you Abby for your advice!

This is all still very new to me and I'm happy to have found this site to be able to talk to people and read other related posts to help me better understand MG. I'm only 23, so my neurologist said I would be her youngest patient to ever have MG. This makes me question, how common is it for people my age? From what I've read so far, it seems like MG is very unpredictable and presents all different kinds of symptoms and at different variations of severity. I'm an athlete, so the thought of losing the biggest part of my life (aside from my son) is upsetting, but the waiting is worse yet, and it seems like everyone with MG has gone through the waiting game.

I am also seronegative. I take pyridostigmine (mestinon). I take 60 mg 5 times a day. I started with just an eye droop. Mine has progressed to generalized myasthenia gravis now. The drug does not totally reverse my eye droop, but it does make it less severe. I think that a lot of us are in the same boat.

If you don't have and abnormal MRI, you don't have muscle atrophy, you have normal reflexes, myasthenia gravis is probably really high on the rule out list for a fatigable muscle weakness . I'm glad that you have an old school doctor that actually seems to know something about looking at patients and not just blood tests.

I did... My double vision started in Sept and I tested negative. It got worse and I was retested in Jan and had a positive....

PS.... mestinon does not help my double vision. I take it every three hours and still have it.... It may not be as severe, but I still have it.

Hi there

I am so sorry you are going through this and "waiting game" is one thing we all definitely have in common!!

My symptoms started 9 years ago when I was also 23 - facial droop, eye droop followed by walking, breathing problems and general weakness. Like you I had an MRI, x-ray and every blood test going and all were normal. I was told it was in my head. Thankfully the symptoms improved after 2 years to mild, fluctuations until 4 months ago when it all came back with a vengeance and doesn't seem in any rush to go anywhere! I have had the same round of testing, all normal again but as Abby said - they only tested for AChR antibodies both times despite MG being suspected. This time I have been told "Functional Disorder" by the same neurologist I saw 9 years ago but my GP referred me to a Neuromuscular specialist as she said my facial weakness is certainly not imagined and thankfully the specialist agreed! I am now on a 2-3 month wait for Nerve and muscle tests and hoping for some answers!

I am definitely no athlete but I miss my regular exercise and nights out dancing.....and high heels - dresses are not the same without heels!! I am so sorry you are having to adjust your life to this illness - it is so hard and I am sure we all know how you feel, so one thing is for sure - you are not alone.

Good luck with the mestinon - I really hope it helps and you have some answers soon.....and if you do end up in the waiting game with some of us here, you are in good company and have our support and complete understanding - which isn't always the easiest to find in your family and friends if they are struggling to get their head around this :hug:

I was 23 when I was diagnosed as well, and I'm a male. I fell outside of the "normal" age range for MG. No eye issues until this past April. It has not been responsive to Mestinon or steroids (could be because of low dosage), but don't give up.

Hi! Welcome to the forum! I hope others sharing their experience helps a bit with the waiting game. I also tested negative 10 years ago when my symptoms first started (initially only double vision, then progressed to generalized weakness over about 9 months). I was diagnosed about 3 years ago after a long journey.

It's great that your doctor is willing to try the pyridostigmine. I hope that you see some results from that. My double vision has been a constant the past decade, but to varying degrees. Mestinon helps some, but does not clear it. High doses of prednisone helped the most, though that is certainly not sustainable over a long period of time. I'm now on a very small dose of prednisone and Gengraf (a long-term immunosuppressant). I also take Mestinon about 3-4 times/day.


I hope you find answers soon.
Cate

THANKS for this reply. Mestinon hasn't completely gotten rid of my eyelid droop either. I'm on 60mg X 4. It has greatly helped with my legs, arms, swallowing, and slurring my words.

Sorry you have to wait for answers. I was doing that 5 months ago and I remember the discomfort. Waiting is really hard. Hoping you are well and that MG is ruled out.