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Neuromuscular Diseases Board Index
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... Hi Brocallie, Thank you for your reply. I should not have said spasms as my neuro has said Blepharospasms but there is actually NO spasms around my eyes. My eyes are weak and open only when they want to but not usually without help from my fingers to get them open and my right is started to droop about 2 months ago. They have told me that I definatley have MS, as I have the... (3 replies)
... Brocallie, I am so curious. How were you eventually diagnosed with MG? Which test said that you have it? (Especially after the seronegatives you mention.) If I end up going on the steroids, how hard is it to control weight gain? Are you sick and enormously hungry? What about your double vision, how is that for you now? My Ophthalmologist has written a referral... (8 replies)
... Hi Brocallie! Good to hear from you! I was getting a bit worried. Sorry you had a stressful week. I hope your doing better now. The EMG was normal. Just what I expected. I'm beginning to think I'll never find an answer. The neuro said he has done all the MG tests that he knows of and is sending me to a research center. The research center has notified me that they... (26 replies)

... Hi Brocallie, Sorry it has taken me a while to respond to your last post. The last week as been pretty severe for me. It sounds like your symptoms are almost exactly the opposite of mine. What I mean is that the chewing, swallowing, breathing, & choking problems for me are minor. I've not had double vision, just blurry vision. However, the weakness in my arms and legs,... (26 replies)
... Hi Brocallie, Thanks for your suggestion regarding looking for a neuro that has a lot of experience with MG. Although, that may be somewhat difficult as I've heard that MG is actually quite rare. I've checked into some neuromuscular specialists at the University of Washington Medical Center and none of their profiles mention MG experience, but one does mention that she... (26 replies)
... Thanks again Brocallie. The tingling could be due to a different neurological issue. I had 2 strokes in 1997 so perhaps it could be due to those. Yes, 13 years is a long time to be dealing with this alone and I'm ready for a resolution and I'm frustrated that I was never checked for a neuromuscular problem in the past. I think the doctor's never checked because they... (26 replies)
... Thanks for your response Brocallie! I'm not sure which antibody test was done. I was so disappointed when the nurse told me that the blood test was negative that I hung up the phone ASAP to keep from crying. I started having symptoms in 1997, but every neurologist I saw told me they didn't know what was wrong with me & they couldn't help me. I stopped seeing physicians... (26 replies)
... Just an update! DD is now on 60mg of prednisone every other day. She takes the 90mg of mestinon 4 times a day now. She has been doing really well but constantly worries that she will get worse. She says she sometimes has shortness of breath when she wakes up, she no longer takes her 1am dose of mestinon so that's 8hrs with no meds. Thankfully she is pretty much a normal... (62 replies)
... Brocallie, thank you again for your reply. If the Lyme is Negative too, I will have the testing you mentioned above. Thank you again so much, I am so ill I don't know what I would have done without people like you who help others on the boards. (5 replies)
... Brocallie, thank you responding. I knew that the extremely dizziness was not part of MG so I will need to get more tests done. Thank you! (5 replies)
... Just an update. We ended up taking her to the er on monday. She was very weak and ended up in icu for a couple of days. She has had three plasmaphareses treatments and will have two more this week. She is at a children's hospital that is also a teaching hospital therefore there is alot of different input on her condition and treatment. They added steroids to her medication... (62 replies)
... I came here to vent to you Ms Brocallie! DD's neurologist nurse called today to let me know that the dr. doesn't understand what we need a referral for and will not sign it!! He will not order the tests that they have requested and said i should try her primary care dr. We have lost a week now because of him! Now we have to wait for the primary care dr. to get the form and... (62 replies)
... Brocallie~ I'm having a hard time getting in to see Dr. Trivedi!! I'm not even sure she see's patients under 18:( I keep being referred to the pediatric hospital which i really don't want! I'm at one of those now and just not confident they see enough cases to even know how to treat the difficult ones. I'm not giving up, i'm going to email them til i get what i... (62 replies)
... Brocallie, you are an answer to prayers, my dd's own personal :angel: ! The dr. we had today was more concerned about telling her about MDA camp than anything else, i wanted to smack her! Dallas isn't too far for us, about 40miles., definitely worth traveling to avoid more surgery. I will keep you updated! Oops! Didn't mean to hijack somebody elses thread:p (23 replies)
... I'm sorry you haven't been feeling well (((Brocallie). They are letting my dd go home tomorrow. They want her to have blood tests in april and may to check on the antibodies. They are still very high even though she had 5 days of IVIG. If they are still high in May he wants to schedule open chest surgery for a thymus sweep, there was nothing on the ctscan. I do not feel... (23 replies)
... Brocallie, Patricia, How did your symptoms start ? I know the typical start is double vision etc.. were your s that way too ? Was your thymus be removed ?If so did that help ? I read that MG has a very decent treatment option that can improve quality of life drastically.. would you say that's true ? Thanks (23 replies)
... Very new to this site and thank you for the information I so much need to keep my fight going. Firstly, as a Mom, I commend you (Gobsmacked) for your tenacity and perseverance in dealing with your daughter's case plus her other disorder which truly can be trying. And to you (Brocallie) for your medical advise and attitude in carrying on with life as normal as possible. For... (62 replies)
... Hi Brocallie, We just found out a few months ago that my dad has myasthenia gravis and his symptoms are getting progressively worse. The mestinon that he has been prescribed works, but only for short periods of time and he is getting depressed. He slurs his words, has difficulty swallowing (hes lost a lot of weight) which is scary because he also has diabetes and has been... (62 replies)
... Hi Gobsmacked, The trip was good. Magical, even. MG stayed away the whole time, just rearing it's ugly head again on the plane ride home. I'm back to DV again now and planning more IVIG to see if I can get some sustained control. ANYTHING can cause worsening. It's the pits, too, especially for the first months and years because you can feel so good, only to lose it... (1 replies)
... Hi, How was your trip to NY?? My daughter had her followup last week. The neuro thinks she's doing really good, and she was. He added depakote for her bipolar but nothing else. Today she had her gi button removed. Now she is slurring her words and having trouble swallowing, not major. I know you're not a dr., but frankly i would rather know from someone who... (1 replies)

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