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...
I am 63 years old and was fine until I had wrist surgery 4/15/2015. Immediately after I started having rapid loss of strength. It took 2 months before I found a neurologist who identified my problem as MG and put me on medicines. He started with Cortisone and Mestinon. Neither have seemed to work. When I first went to him I couldnt even hold my head up. I worsened rapidly and became severe nearly overnight. He put me on Plasma Exchange treatments and they didn't work.After the 5th during which my blood pressure dropped to 80/60 I declined the next one. Its been a week since I had the last one and I feel no improvement, actually getting worse. I am bedridden, cant brush my hair, have a neck brace to hold up my head but now my arms are so weak I need help getting dressed. I take one Modafinil in the morning which helps marginally and 3 60mg Mestinon during the day with the timed released version at bedtime. I am bedridden and desperate to find some treatment that will work, and that BlueCrossBlueShield insurance will pay for. My Dr has told me there may be nothing that is going to help me but he is suggesting the Immunoglobulin IV. Its just too expensive and temporary to appeal to me. Can anyone suggest anything that might help me? At this point all I can do is write my will and make my final plans.
It sounds like you are 2 months into this disease, and your neurologist is already calling into myasthenia gravis. I know you've gotten off to a VERY rough start, but it's good your condition is identified, and you will stabilize once the treatments start to work. You want to rest as much as possible (sounds like you already are).
Others on this helpful and supportive site will surely chime-in about medications and treatments, but you need to know that any Steroids (prednisone) will take some time to become effective, and may actually make you a little WORSE in the beginning.
Feel your Neuro out ; many of us are on our 2nd or 3rd Neuros. Most physicians, even neurologists, are not as familiar w/ MG as other diseases.
But right now, your main goal is to rest, and avoid crisis (respiratory muscles weaken to the point you cannot breathe on your own w/o a ventilator).
You found this site, which tells me you are certainly being pro-active in your own care. I know you are extremely weak, and feel like crap, but it will get better.
Take Care! Chris.
I would be surprised if the Prednisone does not eventually help, but you need to find the right dosage. I think I've heard others here say they were in such a bad state (as yourself) in the beginning, that they started off on 60mg of Prednisone, and then stabilized in a few weeks (?). Once you start feeling better, tapering OFF of prednisone is a priority.
Again, bounce these things off of your Dr. If you're not comfortable with him, then fire him and get another. For him to infer their may be "nothing that is going to help" is UNACCEPTABLE.
You are at a critical stage ; I dearly hope you have an advocate that can be in your corner and speak up for you. If not, try to find one and educate them (this site).
Don't give up, and don't take NO for an answer.
You are taking less Mestinon than me (I have 4 x 120mg daily) so why not discuss with your doctor if more is an option for you.
I know less about the other meds but understand that it can be a bit of a balancing act for those too and there are options and variants to consider (different steroids for example).
Obviously always discuss any changes to meds with your own doctor but, if you aren't happy or sure you are getting good advice, see another doctor. I have seen four specialists in all (two in US and now two in UK).
I agree that if he is already saying that perhaps nothing will help, it sounds UNACCEPTABLE. That is just not the case history for countless people on this site and out there more generally. Anyway, less than two months after diagnosis there is no way anyone could say that with any accuracy.
Watch your breathing and don't be shy about raising the alarm if you begin to struggle with that.
Did you have your thymus scanned? Have you discussed thymectomy with your doc anyway?
Hang in there - there's a lot of things still to look at and consider.
In the physician's defense, I suspect he/she feels helpless, too. Is there any chance you could go to a research center several hours away just once or twice to get their input? Your neuro may appreciate some direction since he/she seems at a loss to know what to do.
You may want to read what others on this site say about Immunoglobulin therapy before you decide to steer clear of it. As I said, I'm relatively new to the site but have found so much information from these warriors who've been in the trenches for so long.
It certainly sounds as if your MG was triggered by the anaesthesia during surgery. It would be interesting to see if treating it aggressively would cause it to go into remission.
Surely, if something wasn't there, then it suddenly appeared, there has to be a mechanism of action that would cause it to disappear. I've had anaesthesia affect me for 6 mos to 1 year later, so don't give up hope that your life will be as limited as it is now. The longer your body has to recover from the anaesthesia, the greater the potential for you to recover your former health, or at least an acceptable version that affords you a quality of life you are not able to enjoy right now.
Hang in there and stay positive! Keep looking for answers. Find something that makes you laugh every day. Give away from yourself frequently--even if it is a phone call or a card to someone who needs a word of encouragement. In doing that, you become the healer, the strong one; it is vital to avoid always being in the sick role, always being the one who is needy or weak. As you begin to exercise your strengths and look for the joys in life, your focus will change, and you will begin to empower yourself.
This disease tends to rob us of the power of controlling our own bodies; we must do all that we can to regain our power.
Check back in often and let us know how you are. We care!
Bless you and Hugs!
Thank you for taking time to give me advice I really appreciate it and will check into the hospital possibilities I would love to get into a study.
Take care and thanks!
I am so thankful for finding this site and meeting the wonderful people like you. It really helps and changes my outlook from hopeless to hopeful.
God Bless,
Debbie
So, hang in there. Everyone is different and different things work. It all takes time. Also, since IVIG is considered pretty standard, I'd think Blue Cross would pay for it.
Like the others, I suggest you find a different neuro. I have a fabulous one in Tucson, if that helps. And yes, stay out of the heat!!! Good luck, and keep looking for answers....