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hatbox121 Posts: 10659
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Well, I went in. He was a nice man. He sat down and went over lots of stuff with me like symptoms, even back as far as age 4! Then came the tests. The good ole drunk walk test, touch your nose, scratch you everywhere, poke you with a pin, don't let me push your legs down, etc etc. We went and looked at my old MRI together. He found a spot that the radiologist didn't mention that he's concerned about but said it doesn't look like a typical MS lesion. We went back to the room for the game plan speech. He said that he would say MS if not for the odd looking spot. So instead as of right now it's possible demyleating disease. I have to go back for an EVP, MRI, then I'll see him, then depending on the MRI possibly a spinal tap. All in one day. I have to take someone with me just in case. I also had blood work done for lupus, RA, sjogen's, and a couple of other things. That's about it. Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences.
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Auntie3285 Posts: 9113
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Wow, hatbox, I would definitely say he was thorough in your testing and information. I have never heard of demyleating disease. I guess that is one I ll have to look up in a bit . Do I sense that you might be a little down this evening rather than optomistic with his findings ? Chin up, hon, and when you have the other tests, we ll pray for the best outcome to be good news. Marilyn  |
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hatbox121 Posts: 10659
Group Leader
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He was quite thorough and spent alot of time with me, asking about stuff, showing me my old MRI, explaining things. I actually liked him! Shocker huh? I'm only down because I'm hurting and everything. Plus it'll be a month and a half or two before I can do the testing so the waiting's got me a little down. I'm not a patient person. Demyleating diseses (and I'm not spelling that right) include MS but have other diseses in that catogory too. It just means something where the mylein is deteriorating. Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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MoonSlide Posts: 31
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Hi Hatbox, I'm glad you like your doctor, and I agree, he is very thorough. Many of our nerves are surrounded by cells called myelin sheaths. These allow for quick transmission of neural impluses. Demyalination means something is breaking these very necessary cells down. I'm hoping they find what it is, and that it is treatable. You are in my thoughts, and prayers. MoonSlide |
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stillhopeful Posts: 4746
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Hi Hatbox, I am happy to hear that you like your doctor and that he is very thorough. Those are important things you want when trying to find answers. I hear you about the wait and being impatient with waiting. I too am usually laid back and don't worry too too much but the unknown is always hard to deal with. You are in my thoughts are prayers, sweetie. PM me. Gentle Hugs~ Christine ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Christine
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I am not a doctor, but I sure do make a lot of visits to them. Any information discussed with you, is just my personal experience or information givn to me. I am not your doctor, please call him/her if you are having problems.
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When you get to the end of your rope, tie a knot in iit and hold on tightly. You will get through your problems, because we are all here for you. |
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hatbox121 Posts: 10659
Group Leader
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Christine, I've always been able to handle whatever life sends my way. But just tell me already ya know? I can deal with a dx but the waiting and wondering and not being able to do anything is what gets me! Oh well, it'll come soon enough. Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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stillhopeful Posts: 4746
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Always know my prayers are with you and I hope you have some answers real soon!!!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Christine
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I am not a doctor, but I sure do make a lot of visits to them. Any information discussed with you, is just my personal experience or information givn to me. I am not your doctor, please call him/her if you are having problems.
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When you get to the end of your rope, tie a knot in iit and hold on tightly. You will get through your problems, because we are all here for you. |
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