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 had my 4 month visit with my Nuerologist. He gave me 2 new interns to work with to start off. I gave them as much information as I could think of while they worked me over. One of them made me look up for such an extended period, my wife said my right eye was twitching and jumping around, well ok then. Then I had to count as much as I could on one breath, made 58 which they said the best for his patients. I said I had shortness of breath, I thought it was the case with most people with MG, I don't care how high I can count on one breath. One of them made me sqeese her fingers, I don't like doing this, they have actual gauges to measure grip strength if you need that data then you can have numbers to track improvement/deterioration. Plus I rarely get the same interns at the university so squeesing random individuals fingers seems fruitless. I told them I felt better before I started the recent reductions in my medications and I was going to ask to reinstate some. They didn't feel I was going to be successful.
My nuero came in and I explained my feelings. I have changed my diet, I now weigh less than I did over 30 years ago but this doesn't mean much because I don't have the muscles any more since I can't work out. Anyway I thought I could go back on more Prednisone instead of the 20 every other day since I think I can maintain my weight and I might be able to do more. He said that taking more would just be giving me a "sugar high" and hoestly I would be fine with that but he wants me lower. I then questioned if the Celcept was working as desired and he showed me how much lower my antibodies were than when I stopped Imuran so I guess it's ok. The intern must have told him about my eye because he brought her back in. We did another eye test and he asked when I had taken my Mestinon and I explained that I took my last dose when I arrived in the waiting room. He turned to the intern and explained that since over an hour had passed I was in the "sweet spot" for the Mestinon helping. Round trip for the visit is 7.5 hours so I had staggered my pills to make sure I would be ok for the driving, he had cut me back on the previous visit. So after going round and round we negotiated an increase in Mestionon, kept Prednisone the same. My wife asked him to tell me to quit taking on so much stuff, he told her that she should be encouraged that I wanted to try and not to worry, the MG would stop me when I went to far. Bottom line is he seemed to happy and said I could go to 6 months for the next visit.
Lastly he asked me to turn around, the exam room has a huge mirror on the wall. He asked me if I recognised that guy in the mirror and of course I did. He said you are not that young guy any more and yeah that's true enough but I still want to do more things and be the best in the possible position.
Well, I am gratefull that I am able to do more things and that I was lucky enough not to have been set backl I was 60 and retired. I really feel for those younger people who need to work and raise families while struggling with MG.
before i go into details i am curious to know which university you are going,
now i can explain a bit more what all of us go thru with drs, interns like you have ect.it is the protocol that most iof the universities follows
do not forget that interns are newcomers to become or are doctors so be patient, i see from your blog, that you are very impatient, and the one you shoulld let know the ways you feel is your neuro. it is imperative that we all have or build a good relaction with him/her, as they will be the ones to help us thru this desease.
all the test and requests, questions made by the interns as well the neuro, are parst of the way your body adapts to getting weak,your breeding, ect.
if you are a bulbar or generalisided it is important that you have control of all these facts, because they are part of your life. forget the past, the way you use to look,ect. because otherwize you will be getting in trouble with your control.
you will have to manage all your dayli activities, change of life standart, including food, ect.
you need your wife support, but the rest you have to overcome, eventualy with good control you should be able to get yourself going on the minimum dosage mestidone 3mgs. dayli and prdnisone 5 mgs, every other day.
i am 8 yrs old, never sick in my life untill i got mg. but i am at the minimum of dosage and fuctioning ok.,and if i acn do this so anybody else should
best of luck
Andre
again my appologies
Andre
Andre
I got MG when I was 65 and had retired, so too felt luckier than the folks who have to try to work and have MG at the same time.
When I was a few months into MG and had breathing problems and was in the hospital (Mayo Rochester, MN), I got those tests you talk about (eyes, grip etc), 11 times. Mayo is a teaching hospital, so the neuro came into my room with his students and went through the MG information for them and showed them some of the testing stuff, and then asked me what I thought about letting each of the students try it for themselves over the next few days (I was there 3 days). I agreed to that and so got them all to try it. They got different results too based on the mestinon levels.
I suppose the best testing time would be if we didn't take mestinon for half a day and then did the test as it would give our "real"" condition.
My neuro never retested my antibody level as she said it was not reliable to tell if I was better or not -- the levels didn't correlate very well with symptoms. I read later that comparing levels in the same person before treatment and during treatment did give somewhat of a view of how well it was working. However, even if we have some antibodies in our blood, they are likely creating some problems. The goal in treatment is to get enough treatment to function OK, but not have to take so much immune suppression that our immune system won't fight off other problems. A balance that, as you say, we get to negotiate with our neuro.
My own preference was somewhat over treatment to get rid of the MG better and try to get by on somewhat compromised immune system -- and avoiding places where I might pickup a flu or cold -- that included staying away from hospitals and clinics as much as possible!
I am still lucky, as my MG is in remission yet, and I am hopeful it will stay away (I am 73 now). 15% of us get remissions of varying lengths, with no clear understanding of why that happens.
Good Luck
Russ
Yeah Russ I let them do whatever they want so they can learn more about us.I hadn't been at the University for a while, I had been going to my Neurologist's other clinic. He quit using the clinic because they wanted him to do more Alzheimer patients and he prefers MGers.
My Neurologist is using the data somewhat and I am more comfortable myself with numbers rather than feel.
Yeah I started on 60mg of Prednisone daily as well as high dosages of Mestinon after my failure with Plasmapheresis but my current Neurologist quickly cut me back and started me on Imuran. That failed so I am on Celcept.
I kind of bought a heavy ceiling fan(36 pounds) which is bugging my wife but my plan is to make a platform and use a scissors jack mounted on top to support the fan since my arms don't work so well. If I fail I can get someone to install it so I feel it's no biggie.
I don't concern myself with the rare possibility I might go into remission. I have been lucky that I have only been sick once in the past 3 years. I wash my hands frequently, use food prep gloves. I get all the shots/vaccinations my Dr. prescribes...
Yesterday I went to the viewing for my wife's 44 year old nephew. He passed away due to a 90% blockage. His 13 year old daughter found him. Now I had some head butting sessions with her in the past but yesterday we talked a lot and became closer. One of things she told me was that sometimes life just smacks you to the ground, you can choose to lay there or get back up. She is trying to get back up. That's all I am doing in my discussions with my Neurologist, just trying to get back up.
Take care Russ
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My issues were the Imuran had really affected my liver numbers, to the point if I had continued my Dr. said I would be eligible for a liver transplant. He took me off of it, he personally doesn't like it, Mmy Neurologist put me back on, albeit at a lower dose. My Neuro then took me off and put me on Celcept. My other issues were the Imuran had caused a severe weakening in my muscles, particularly the right leg to the point where I was using a crutch and cane. My right side became so weak I had to use a knee brace on my left knee due to excessive loading. My reaction may be an unusual one but it isn't without precedent, I found another user who became wheel chair bound, recovered after discontinuing usage. It also caused some digestive issues.
Sorry if I came across as struggling. I am fine, I am much better now than when I first became affected by MG. My Neuro and I typically joke around a lot, we have a good relationship. I am a happy person. Russ probably knows me better than others here. This doesn't mean I don't want to do better. The hot summers affect me, I found I can swim at night ok. Before I retired they called me "House". This site could use more emojis:):)
I started noticing my legs were weakening after a couple of months. I continued taking it for almost 2 years but they became severe when I went to the higher dose. My Neuro could not believe I was having such issues but my Dr. believed me. Finally my Nuero conceded I was indeed "weird" compared to his other MG patients and switched me over.
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