Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 : Thanks so much for getting me back on with the group. I don't know how I ended up off the list because I was on it, but may have had something to do with problems with Road Runner. Hope everyone is doing better. This darn disease is really horrible with all it's off shoots. Is anyone going to Dr. Bruckner in the near future. I wanted to see if she has ever seen a case of RP with Myasthenia Gravis like I have been diagnosed also. Myasthenia is an autoimmune disease too, but have not seen any info linking the two. Ironically, Myasthenia Gravis also affects the breathing and I am able to hold my voice better with being on the Mestanon medication for Myasthenia. I was in a flair when tested for MG(myasthenia Gravis abbreviation) and the test helped my breathing also. Anyone with an upper eyelid droop that has developed over the past few years should request to see a neurologist for testing. They can run a bloodwork test for Acetylcholine receptors, but mine came back normal for over 2 years which threw off my employer (an Ophthalmologist, and 2 neurophthalmologists). They completely missed it. If anyone has questions about this I will be glad to post more to let you know. In most cases, it is good that MG was diagnosed because it is more easily handled than the RP so treatment has helped some. At this rate with RP, MG etc. I should cover the alphabet in a few years. Please don't hesitate to ask questions if needed. Hopefully I will be able to post more often now. Take care, Cath ( Florida ) Quote Link to comment Share on other sites More sharing options...
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