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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-13-2013, 07:45 PM | #11 | ||
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Thanks again for the advice. I have had many blood tests including for thyroid, vitamin levels (only D was low) and ANA and RA as well. My neuro has been extremely thorough. As far as panic attacks ago I have dealt with them for the majority of my life and I would just move on. It is what it is but with the recent events with my vision this has put my anxiety into overdrive. I have reached out for therapy (Psychiatrist can only prescribe meds which my neuro is willing to do) so I am proabably going to do counseling for a bit during this process. I'm look at atleast a 2 week wait to see any of those kinds of doctors. My counseling for the time being are these forums, my girlfriend, and I have been calling the MSFriends line. I have been managing my anxiety with Xanax (which I have had for years and took only as needed) but I have to take it daily right now. To answer your question about PTSD, I ABSOLUTELY believe I have this because getting my MG diagnoses was traumatic. I was in and out of the ER all the time in 2007 because my throat and toungue felt weird and I couldn't breathe. NO ONE believe me and they kep saying it was in my head and the local health dept was useless. Once I finally got insurance, I went through many Neuros, Family doctors, and ENTs for my bulbar symptoms and most of them said it was in my head. This also includes a Neuro at the Cleveland Clinic which was supposed to be one of the best places to go for help. After a year and a half after the symptoms started it was my current Neuro now that took me serious because I was SURE that I had ALS or something affecting my bulbar muscles. He thought MS, but checked me for everything, even LYME because I asked him to. The blood test confirmed I had MG and I wasn't crazy. Getting the diagnoses alone was medicine for my symptoms. I had that relief that I wasn't nuts and there are a lot of doctors that were wrong and should have atleast did some testing before saying it was in my head. I've never take a med a day in my life for MG. I've just lived with it for 5 years. So a lot of that old anxiety that I went through for about 2 years is back because I am facing a possible MS diagnoses now. My doc thinks it may be the MG and wants to do this Lumbar puncture to rule it out because all of the other testing is normal with the exception of some weakness in my right leg which he's not concerned about because all the visual pathways and eyes are healthy. I'm just not convinced that my vision wavy distortion is in line with MG because it's not doubled or blurried. Either way, I am going through the motions. Optician, Neuro Opth, brain, and eye mr, iand today the Retinal Specialist cannot find anything wrong with my eyes except for eyelid weakness, which has seemed worse lately. Even in the morning they're extremely droopy, more so than in the past. I did start getting blurry vision a few months ago, but never had wavy vision. Maybe the MG has slapped me across the head and it's time for meds? Doc wants to wait after the results of the lumbar puncture before we do anything. I am pushing through and it will be a couple of weeks before I get counseling. I am hoping this is a fluke MG thing, but if not, I will learn to deal with it. Thanks again for responding, and you're right, my relationship has been much better and has opened my eyes to what a beautiful person (inside and out ) I am with. Thanks for the supports, it's much needed from everyone, and I am greatful for all of you. Talk to you soon |
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06-05-2013, 04:59 PM | #12 | ||
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Just wanted to follow up that there hasn't been a change with my vision or health. I tried the Mestinon and that did help with fatigue but didn't touch the vision issue. I started Lexapro for a few weeks and it helped with the depression. Counseling is so so and I'm not sure if I like my neuro-psycologist. Anyways, I get my lumbar puncture results tomorrow. I started getting Tinnitus last week where it was loud enough to give me a tough time falling asleep. I told my doctor's and they said try tapering down the Lexapro and I may try something different. Sucks, because I was doing well until that started. My ears have been pretty sensitive to noise as well, and I don't know if some of you know this or not, but apparently MG can effect hearing and cause hyperacusis because of weakened ear muscles. I'm not going to say that's what's happening to me right now, but who would have thought?
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06-05-2013, 06:36 PM | #13 | |||
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I have had constant tinnitus that started with my MG symptoms and has never gone away. I am very sensitive to noises. Noises seem very loud to me and startle me, but they do not seem to bother anyone around me.
kathie |
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06-06-2013, 05:49 PM | #14 | |||
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I am not too sure counseling has ever helped me all that much. I did better with a basic counselor than with the neuro-psychologist. I went to one for an evaluation, and my evaluation of her was that she was much crazier than me.
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Celeste |
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06-06-2013, 08:20 PM | #15 | ||
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I'm sure you've come up with this test online for wavy vision and that your doctors have tested for this, but on the off-chance that you haven't:
http://www.allaboutvision.com/condit...msler-grid.htm |
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"Thanks for this!" says: | Fortunatos (06-06-2013), sandy56 (06-07-2013) |
06-06-2013, 08:52 PM | #16 | ||
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06-06-2013, 08:54 PM | #17 | ||
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Lol. Im not too crazy about him either.
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06-06-2013, 08:57 PM | #18 | ||
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May i ask, do tube televisions bother you or certain electronics? People talking loud or too many people talking bother me too.
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06-06-2013, 09:08 PM | #19 | ||
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I think I understand your vision problem, I describe it as lookimg through heat rising off of a hot car, wavy kind of like a fun house mirror. I have double, blurry vision but sometimes I have "wavy" vision too. Last time it went away when I had IVIG.
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06-06-2013, 11:40 PM | #20 | |||
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Yes other electronics bother me too like the buzzers on the dryer, etc. There are certain pitches that are more bothersome (seem louder) than others. kathie |
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