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...
Hiya my fellow MG'ers. I'm struggling really bad right now, and am in need of some advice. I got a friend to take me to my neuro appointment yesterday, and it went kind of badly as far as I'm concerned. I had seen him twice before, and he seems like a nicer type. He had me do blood work, which showed nothing, and then an EMG, which hurt far worse then I remember the last one I did, and was "inconclusive".
So this third visit, was to get those results, and he said based on what the fact that he can't find MG, he doesn't feel like it is in his best interest to treat me. This truthfully shocked me, and I feel a bit confused by this. Isn't 50% of the people who have MG seuronegative? How is it any interest of his whether he treats me or not? Shouldn't that be my call?
So I don't know what to do anymore. He says there isn't much else he can do to prove whether I have it or not with being seuronegative, and he feels that my self management is enough to sustain me. And while, over the last 8-9 years, I've perfected how to manage and survive with this, I have no life.
I'm trapped inside most days, I rest most of my days, I'm capable of playing on a computer for a few hours at a time, and watching tv for the same. Cleaning, while I can do it now, which does make me happy, is in spurts. I clean a part of a room, and rest for 30 minutes. Rinse and repeat until it is all done. Cooking I've done well with, but I do sit a lot, and bring the chair to the stove so I can sit and watch it.
Activities are usual, on good days I can go out and have fun, but generally it is at the cost of the next day. I'm so tired of this cycle, and want to change it. I see some of you working, running, functioning quite better then me, and honestly, I envy that. I haven't ran in 9 years. I haven't done anything super physical in the same. I haven't worked in 10 years, and it makes me miserable.
So what would you guys recommend? Should I just do what I've been doing, and accept life for what it is? Am I expecting too much? I don't know how to break the cycle, and well, I'm just so tired.
So this third visit, was to get those results, and he said based on what the fact that he can't find MG, he doesn't feel like it is in his best interest to treat me. This truthfully shocked me, and I feel a bit confused by this. Isn't 50% of the people who have MG seuronegative? How is it any interest of his whether he treats me or not? Shouldn't that be my call?
So I don't know what to do anymore. He says there isn't much else he can do to prove whether I have it or not with being seuronegative, and he feels that my self management is enough to sustain me. And while, over the last 8-9 years, I've perfected how to manage and survive with this, I have no life.
I'm trapped inside most days, I rest most of my days, I'm capable of playing on a computer for a few hours at a time, and watching tv for the same. Cleaning, while I can do it now, which does make me happy, is in spurts. I clean a part of a room, and rest for 30 minutes. Rinse and repeat until it is all done. Cooking I've done well with, but I do sit a lot, and bring the chair to the stove so I can sit and watch it.
Activities are usual, on good days I can go out and have fun, but generally it is at the cost of the next day. I'm so tired of this cycle, and want to change it. I see some of you working, running, functioning quite better then me, and honestly, I envy that. I haven't ran in 9 years. I haven't done anything super physical in the same. I haven't worked in 10 years, and it makes me miserable.
So what would you guys recommend? Should I just do what I've been doing, and accept life for what it is? Am I expecting too much? I don't know how to break the cycle, and well, I'm just so tired.
it's REALLY challenging to get an MG diagnosis unless you have the antibodies or have symptoms that match the textbook. be patient and hang in there- hopefully you'll get stronger with some huperzine!
It is hard to fight this battle. It helped (helps) me to look for members of "My Team" rather than feel that it is me against a doctor. We don't need this fight. Find a Team! A Primary Care Doctor, A Neurologist, An Opthamologist.. etc. You will find that relationships with some work better than others! Ask around and search reports of doctors online. Love, Becca
Good luck
Chuck
As appalling as it is that your neuro is all too willing to close out your file I have to say good for him for admitting he is clueless. Too many would never admit not knowing and keep you coming back.
Please persevere. You deserve the best treatment out there, it's a basic human right.
Take care,
Larissa
Don't you know that most people with MG can lead normal lives? Because living like you have described is what most of us have or are doing and that is normal. I mean our friends and family live that way right? (OK enough sarcasm.)
1. Unfortunately what we have with our doctors is a business relationship. And like any other business relationship it can be good or bad and either party can terminate it.
You can take my advice for what you paid for it. But I believe whether nice or not you don't need THAT doc. I have had a neurologist miss my MG all together and supposedly he treats patients with MG. It is not goo to say, but you need to keep looking. It is terrible because you didn't have the energy to set up the first appointments and could have definitely spent the money on something else. And in my book with medication or not anytime I have to shower, dress and make a trip that feels like a waste is doubly painful for us.
2. Make notes and journals on how day goes. Don't underplay it when you talk to a doc. And try to get a patient advocate (family or friend) to go with you. A patient advocate is not just along for the ride. They need to speak up and argue on your behalf. "No! Even when he really wants to do something he can't! So and so happens to him when he tries."
I am seronegative. I had one neuro miss the diagnosis. I have a civilian neuro and finally got into see the Vet Admin neuro after being denied multiple times. I have complained to my civilian neuro about memory issues, balance, fine motor skills problems and pain in my muscles. Half of which he dismissed. I went to my prescribed general MD VA doc about my MG and he refused to refer me to a neuro. I had a memory incident and finally got referred. After a several month wait I finally got to the VA neuro for memory. I told her about my MG and she said there was nothing in my record about it! She wanted to know why the VA didn't know about it and why she was seeing me for memory and not MG. She said she knew my civilian neuro and thought he was a good doc. Then she looked at the CT scans he ordered and said that both were ordered without contrast and you couldn't see a thymoma that way and the test needed to be redone. I asked why my other neuro would have ordered it that way if he was so good and she had no answer. I had assessed the balance issues and fine motor skills problems I was having was due to the 2 pinched nerves in my neck and back that my civilian neuro diagnosed. She said the way he diagnosed them has often caused doctors to over diagnose pinched nerves and that may not be what was causing my problems.
Long story - short. We have to push for ourselves and we need back up from friends and family. Most of us are the independent ones that others usually come to for help and now it is the other way around. In my mind - it sucks. I just try to keep positive people and positive things around me and keep plugging along. This group helps a lot. Vent, laugh, cry and do whatever it takes to keep on rolling.
My most positive thoughts are headed your way!
Kimber
Then there are days where I feel somewhat ok, and enjoy my day, with family or friends, and I cherish it. I normally pay for that enjoyment, but I'm usually ok with that. Guess right now, it is just a lot to deal with on my own. My friends don't really get to see me really sick, because I don't let them. My mother gets to, but she seems as clueless as the doctors sometimes. But at least she listens, and cares, and will help me if I need it.
I'm doing research now with medicaid and medicare to find a new neuro, and will be making an appointment when I find one. So far the few I've called don't know much about MG, so the search will continue.
Thanks again for all the encouragement and advice. It really does mean a lot to me, and I am so glad I'm not alone in my feelings and position. Not that I want anyone else to feel like I do, but it is nice to know I'm not alone.
I have to ask something of everything that has seen this. Why does it feel like I have to prove myself? Like if I beg like a little kid enough, the doctor will give me what I need to shut me up? I don't know about you guys, but I'm curious why is it this way? I truly feel that just seeing me in person, watching how I move, and seeing how weak I am should be enough to assess that something serious is wrong with me.
I don't understand this notion that I have to beg to someone to get help, when if they are in the profession of helping those of us with it. Shouldn't they just instinctively try and help? Maybe it is just me tonight, after a really long and tiring day, but I feel like I shouldn't have to beg and grovel at someone's feet to get basic care.