Quote:
Originally Posted by AnnieB3
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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Thank you to everyone who replied with support and help. I just can't stop crying. I went to see the neuro today and he said your muscle test was negative so you don't have myasthenia or any neurological disease. I said I can't talk coherently anymore, (he said that could be degenerative dementia) sometimes it's hard to swallow,(he says I am manifesting symptoms) my right eye lid drops, (he says I am manifesting symptoms) I can't breathe (he said that could be anxiety) I said I spend 16 hours a day in bed sleeping. (he ignored that comment). I said I now have breath shudder often ( he ignored that). I said you only tested me for the common antibody and not Musk (found in bulbar symptoms) or tintin (found in elderly people, I'm 75 years of age.). He responded that the antibody test is not reliable and he only uses the EMG test. I am going to have the antibody test done privately. I asked him for the referral letter to go to another hospital that has a myasthenia clinic, which he had promised previously. He refused saying that as I doubted him, it's best for me to get one from my doctor. I asked for steroids, he said no they are dangerous. So he sent me away, no treatment, only my misery condensed dreading what tomorrow will bring healthwise. He might as well said go away and die as you are 75 years old. I do feel suicidal, a thing I have never experienced before, but I can't bear my ill health much longer. The social isolation of not being understood, the extreme tiredness, the struggle to eat food and the constant battle to breathe. My daughter is so shocked she is going to report the neuro to the Medical Council. Meanwhile I will get the antibody test done privately. If it's positive I will go to the Myasthenia Clinic at Southampton for their help. I am getting so weary.