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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-06-2016, 12:11 AM | #1 | ||
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Junior Member
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About a year ago i became very breathless and extremely tired. As I had high blood pressure and an ectopic beat, this was the doctor's explanation for my symptoms, which didn't improve with medication. Then a few months ago, when I was tired my speech would slur. My doctor had me hospitalised as a brain stroke was suspected. The brain scan came back clear, but the slurred speech became worse so that now I am incoherent, not even my husband understands me. I also noticed, at times, I would find even soft food a bit hard to swallow. This continued, then I would start coughing and choking for no reason. Then one night, passing the mirror on the way to bed, I saw my right eye lid had dropped. In the morning it was okay. A few mornings later, I awoke with the right eye lid closed. I prised it open and my vision was blurred. After a few minutes the eye returned to normality. Sometimes my neck aches so bad I can't look upwards. When I was hospitalised, my blood test for just one antibody came back negative for myasthenia. The EMG carried out in my left shoulder, lower arm and hand, plus around the eye area came back normal. The hospital neuro said he didn't know what was wrong with me. Most of my weakness is in my lower legs and back. I have camptocormia and I read that myasthenia precedes camptocormia. I also have hypothyroidism. I went to see one neuro privately and he suggested my symptoms might be pyschomatic if more tests come back negative. This has left me feeling very depressed, as now I think no one believes me. My speech therapist believes me because she said no one can have such severe dysarthria as mine and it be all in the mind. I sleep away most of the day, as I find bed rest alleviates my symptoms. I'm sure the word pyschomatic is printed across my file. I am 75 years of age, why would I want to make things up? I happily married and just want to fully live my remaining years. Thank you for your time. I'm so depressed at not being able to communicate or be understood, having to drink energy foods and not eat solids and feeling so tired all the time.
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09-06-2016, 10:34 AM | #2 | ||
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Member
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You have a lot of symptoms that I am not familiar with. However, some I am. The eye drooping, the speech, breathing and tired, are symptoms I have had. I do have MG. Confirmed by blood test. I would try another Neuro. My 1st one missed MG, and tested for everything else. besides there are different types of MG, that do not show up on a standard antibody test.
You will most likely hear from people on this board who have more Medical knowledge than I do. Maybe they can help more. Good luck and get better FREDH |
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"Thanks for this!" says: | AnnieB3 (09-09-2016) |
09-06-2016, 10:48 AM | #3 | ||
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Member
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By the way, psychosomatic illness, does not mean you are making it up. If you have a psychosomatic illness, you will feel symptoms of problems that are not really there, but they will seem very real to you. It is also a very difficult problem, because you are not aware that your mind is thinking this problem, but the symptoms show up.
I had some problems in my younger days. It is weird. Also, this can be caused by depression. Again good luck FREDH |
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"Thanks for this!" says: | AnnieB3 (09-09-2016) |
09-07-2016, 03:31 AM | #4 | ||
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Junior Member
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09-07-2016, 01:30 PM | #5 | ||
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Member
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I think you have a good idea to see if the neuro will let you try Mestinon (maybe small doses to start -30 mil twice a day or so) to see if there is improvement. We have had people here try that before, when they have no diagnosis. If you notice improvement, you can expect that you may have more proof of MG.
FREDH |
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"Thanks for this!" says: | AnnieB3 (09-09-2016) |
09-07-2016, 09:24 PM | #6 | ||
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New Member
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Sounds to me that firing the private neuro was a good thing. Even though they don't see MG that often, it doesn't mean they should not be able to recognize it when a patient walks in with it, or has symptoms which point to a possible diagnosis.
Hopefully the person you are seeing now can help you, or at least help you towards a diagnosis and treatment. If he/she gives you Mestinon, you should hopefully see some positive effects. Good luck! |
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09-09-2016, 02:56 PM | #7 | |||
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My sister-in-law had a lot of the same issues you describe. Originally, they thought mg, but eventually decided it wasn't mg. After several more months of slowly degenerating symptoms, she was diagnosed with ALS (Lou Gehrig's disease). I know that isn't a good diagnosis for anyone, but at least they finally got it right and she was able to get the assistance she needs. As she says, the uncertainly was killing her all by itself. Obviously, I'm not a doctor and am not trying to diagnosis you. I'm simply giving you another direction to look at and research.
You will be in my prayers that you will find the diagnosis and help you need. |
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"Thanks for this!" says: | AnnieB3 (09-09-2016) |
09-09-2016, 04:41 PM | #8 | ||
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Grand Magnate
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Caprice, The neurologist who diagnosed me said, "You only think your legs are weaker because you don't walk on your arms!"
There are diseases that go from the bottom up. Guillain-Barre is one of them. MG is known as a "head and down" disease, because it usually (though not always) starts in the face/neck area. I agree that you need a new neurologist. I rather doubt that your symptoms are all in your head! What you describe sounds like a combination of fatigable and fixed weakness. I think it's important that a doctor be thorough. Do you have copies of the MG test results? The EMG? If not, I hope someone will send them to you. Doctors don't always tell patients the whole truth. Sad, yet true. What I'm concerned about is that you are in really bad shape and probably need to be in a hospital. If you can't move well, breathe well, or swallow, you need to go to the hospital. They can do tests there. They can check your breathing by checking O2 saturation, doing an arterial blood gases test, and breathing tests. They can do a clinical exam to test for weakness. They can check for double vision. There's so much they can do. How are you feeling now? I find it so sad that you are in such bad shape and aren't receiving adequate care. Please find someone to help you, even in an ER. Annie |
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"Thanks for this!" says: | FREDH (09-10-2016), juliejayne (09-13-2016) |
09-12-2016, 05:31 PM | #9 | ||
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"Thanks for this!" says: | AnnieB3 (09-12-2016) |
11-06-2016, 12:32 AM | #10 | ||
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Junior Member
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I thought I would give you an update. I am due to see a Myasthenia Clinic in a few weeks. My condition has somewhat deteriorated in that choking has become a real issue. Usually happens if I try to eat solids and I end up being sick. So now I just have energy drinks or yogurt with mashed banana. I still have dysphonia, breathlessness which is worse, breath shudder, neck ache, tiredness eyelid problems and can barely walk. I have formally complained about the neurologist who said my symptoms are all in the mind. I really wish they were, then I could start to enjoy life again. I want to go on a long cruise. I'm trying meditation, supplements and positive thinking to try to get better,
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