Don't know what to do
 

Hi all. I'm new here and could use some advice.

I was diagnosed with myasthenia about 15 years ago with a positive tensilon test. Shortly after, I had a thymectomy. The Drs said my thymus was the largest they had ever seen. After many ups and downs I started taking Cellcept, went on disability and learned how to pace myself. I have been doing fairly well the past 2 years—occasional double vision, fatigue and voice problems but nothing extreme.

Recently I lost my voice for over a week. I wasn’t able to see my regular dr and went to see someone new. He gave me mestinon but also stated that he did not believe I had myasthenia and ran every blood test imaginable. The other day his assistant phoned, said there is nothing wrong with me and that they would be forwarding this information to my regular drs.

I am still taking mestinon and my voice has returned but I really don’t know what to think. Why would I experience these symptoms throughout the years if nothing is wrong? Why would the medications work and why was my thymus so big? Am I crazy? I really don’t know what to think or do. Sorry this is so long!

Hi, mrzt. Sorry to hear you're not doing well.

Did you know that Valeant Pharmaceuticals doesn't even taste test Mestinon due to the nature of the product? No, it does not have a placebo effect. What it does to people who don't have MG, CMS, or LEMS is to make them have symptoms of an overdose, such as drooling, weaker muscles, etc.

If it were such a benign drug, anyone could buy it over-the-counter at their local drug store.

I assume that you're still on Cellcept? If so, what it does is to make the "signs" of MG disappear, such as the antibodies! This is simple logic. Why don't some neurologists "get" that?! :cool:

Having a negative antibody test while on drugs only means that the drug is working. But that does not mean a patient is necessarily symptom-free!!

When someone has chemotherapy and gets rid of their cancer, then the scans come back negative, does that mean that they never had cancer? I honestly don't know what these doctors are thinking sometimes!!!

You are having a return of symptoms and obviously need help. Can you see your regular doctor at some point?

BTW, get copies of those labs that were done!! Do you think he would admit that you had positive antibodies (if you did) after how he treated you? ;)

I hope you'll get someone to listen and to take you seriously. Obviously, you know how this disease works and what to look out for. Please take it easy!

Annie

Annie-- I have a question related to your cellcept comment. Would any anti-inflammatory alter the test results or just the strong ones like Cellcept? I've been on Mobic for years to help control the low grade fevers and joint pain to which I'm prone. Is there any chance that would have affected my results?

mrzt-- don't give up. The doctor at the ER told me there was nothing wrong with me. I felt a little vindicated when I got my PFT results. Was this doctor a neuro? Can you see your original doctor or ask for a referral to a different neuro?

Nope, it's an NSAID, not an immunosuppressant.

Ah okay. That makes sense, thanks!

Thank you guys! I really appreciate the information and kind words!

This took me right back to the days when I first started having problems. So many people had indicated that it was "all in my head" that I believed them-- even after being diagnosed. I would tell myself I should just try and power thru. That typically ended badly.

I have an appointment to see my neuro in a couple of weeks and am still taking cellcept and mestinon.