Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Not much change in yrs treatment wise

xmas25
xmas25
I had colonoscopy yestrrday. Nurse had worked neuro for yrs. She was amazed mestinon was still the basic drug. Talking about it I realized it's mestinon,prednisone, cellcept,imuran,ivig,phersis and rituxan. That's not many choices.am I not aware of anymore? We talked about invisible diseases and rare ones get little research $. like most of us i had never heard of mg! As I walked into hospital I lost it.hadn't been in since September when son-in-law died age 34. 3 little ones blood pressure was 210/150 at 1 point I got Iv sedative before they could start since I just couldn't stop brain from racing even though I was done crying. All went well have a good day
Rhanson
Rhanson
Sorry you are having problems. It is frustrating that newer treatments are not showing up that work better.

I talked to my neuro about this, and she said something like "We are actually quite happy with the treatment for myasthenia gravis. The standard treatments do work for the vast majority of my own patients. They do have to learn to balance some problems and side effects, but mostly get on with their lives. "
She went on to say:
" That is not true in many of the other patients we see. Parkinsons, stroke, Alzheimers, tremors, epilepsy, AMS, MD and more even rarer conditions. There are some MG patients we can't seem to get stable, but often that is because of a combination of other problems or medicine reactions. You should think of yourself as lucky you don't have one of the mostly untreatable progressive diseases! Not only that, but MG destroys receptors that grow back readily vs the permanent damage from most of the other conditions I treat. And, if you had MG before the 1950s you had a 40% chance of dying from it in 3 years, whereas now you can expect to live a normal lifespan. Your treatment is inconvenient, distressing, but you have hope for a functional future and probably much more improvement."

I had been complaining about having to be on prednisone and mestinon for months, and although MG was mostly receding and I was doing much better, I didn't like the side effects from the drugs. So, I guess, at least in her mind, most of us MG folks are more success stories than the other conditions neurologists see. Something to be thankful for -- it could be worse, as the Minnesotans say.

Good Luck
Steve0716
Steve0716
I too am sorry for your problems. At a MG national conference I attended, one of the leading doctors said they ought to change the name to "Myasthenia not so Gravis" because of how they have lessened the severity of it. That didn't sit so well with me as mine has become more severe and complicated over the last 4 years. It seems from talking to my many specialists that MG with its list of symptoms does improve with Mestinon and steroids, so the doctors are happy with the response. Add to the mix several complications that are not usually part of MG [stroke, heart failure, etc.] and do not respond to the normal drugs, and then it gets "interesting". I have learned that when a doctor tells you your case is "interesting" it is not a good sign. I'm at a frustrating place myself with some drastic propositions put forth by the doctors that we have to decide on a course of action. Thankfully, I have some doctors that are taking this very seriously and working together to come up with a plan.

Hope you do well soon.