michellev1970
11-02-2007, 06:37 PM
I had a blood test done last month that showed I have the anti bodies for myasthenia gravis; I read on one of the websites for this disease that if you have the anti bodies it means that is a guaranteed diagnosis for this. Does anyone know? I have an appointment with neurologist in December, is there anything else this could be or is it for sure this? I don't know anything about the disease can anyone tell me about it? Will I be able to continue to work? I would appreciate anything anyone could tell me about it.
Thank you!!!!
Thank you!!!!
Sponsor
rayefaye
11-03-2007, 11:54 AM
Hi Michelle, there is a post on here called " My 15 yr. old daughter-what's wrong"" there's a woman there who talks about having Myasthenia Gravis. This post may help you out a lot.
Madalot
11-03-2007, 12:31 PM
My father supposedly had Myasthenia Gravis. I say "supposedly" because I have been diagnosed with Limb-Girdle Muscular Dystrophy and my doctors believe it may be possible that he was misdiagnosed (he's deceased). Assuming he was NOT misdiagnosed, I can tell you that his biggest problem was his eyes. His was controlled with medication, for the most part, but you could tell if he was really tired because his eyelids would droop really badly.
The Muscular Dystrophy website has a lot of information (MG falls under the MD umbrella of diseases). I would recommend looking at that and/or contacting them for additional information.
The Muscular Dystrophy website has a lot of information (MG falls under the MD umbrella of diseases). I would recommend looking at that and/or contacting them for additional information.
michellev1970
11-04-2007, 04:05 PM
Thank you both very much for the replies :) I am just very confused...
Gobsmacked
11-05-2007, 11:55 PM
You are looking for Brocallie! She is wonderful and helped me out so much through the new diagnosis (and surgery) with my daughter. I'm new to this illness but may be able to answer questions if you have any. My daughter's symptoms were very obvious to the neurologist we went to (one of the 3 worst cases he has seen). She actually failed the nerve stimulus test before they even had her bloodwork done for the anti-bodies.
I pray that everything goes well with you!
I pray that everything goes well with you!
michellev1970
11-06-2007, 10:54 AM
Thank you so much... How is your daughter doing? I read your post and it broke my heart I to have a daughter the same age and my heart goes out to both of you!!!! I have not seen the neurologist yet that appointment is not until December the 5th it takes so long to get into see a specialist here. My PCP ran the test to test for ALS but the antibodies for MG came back high. I put the name of the test into Google and MG came up with every search...on the website for the MG foundation of America it said that if you have the anti bodies it's an guaranteed diagnosis, I am of course confused and my doctor said the neurologist will do a lot of testing on me! I have muscle weakness, problems swallowing, my eyes get very tired and by the end of the day it is hard for me to focus on my work and I get so very tired. I have had back problems for about 4 years now and see a spinal doctor for that and actually thought all of this was related to that... I do so appreciate your response and good luck to you and your daughter!!!! :)
Brocallie
11-06-2007, 01:03 PM
Hi Michelle!
I'm glad you were referred to my earlier/ongoing thread. Please feel free to ask me any specific questions. I'm sorry you're going through this--it's very scary, isn't it? Just remember, you're not alone!
Take care!
I'm glad you were referred to my earlier/ongoing thread. Please feel free to ask me any specific questions. I'm sorry you're going through this--it's very scary, isn't it? Just remember, you're not alone!
Take care!
Brocallie
11-06-2007, 01:27 PM
o o o p s !!!
Gobsmacked
11-06-2007, 01:30 PM
Please be carefu! If it becomes difficult to even drink water please go to the er. By the time my daughter's scheduled appt. came she had been in the icu for a week. I kept in touch with her pediatrician and she pushed the neuro to see her two weeks early. Make sure you get on the cancellation list!
My daughter is doing really well now. It's been about three weeks since her surgery. The hardest thing for her (and me!) is not knowing if it helped for sooo long. She was doing well after the IVIG treatment that was a few days before surgery. Now we are just cautiously optimistic! I'm sure you saw the big list of her symptoms on the other thread. She still sometimes has the double vision but nothing like before. Lots more energy too! I wish i could show you a pic. of before and after the med/surgery. She even went to the mall for the first time since we've been here, she was sore afterward but from her gi button.
Hopefully you will be like most of the people our dr. sees who respond well to the medicine! Keep us posted!
:wave:
My daughter is doing really well now. It's been about three weeks since her surgery. The hardest thing for her (and me!) is not knowing if it helped for sooo long. She was doing well after the IVIG treatment that was a few days before surgery. Now we are just cautiously optimistic! I'm sure you saw the big list of her symptoms on the other thread. She still sometimes has the double vision but nothing like before. Lots more energy too! I wish i could show you a pic. of before and after the med/surgery. She even went to the mall for the first time since we've been here, she was sore afterward but from her gi button.
Hopefully you will be like most of the people our dr. sees who respond well to the medicine! Keep us posted!
:wave:
michellev1970
11-07-2007, 12:58 PM
Thank you both so much for the words of encouragement! I am so glad that your daughter is doing better for now Gobsmack I know you are relieved!!! Brocallie that is so cool to go to NYC I live in Arkansas and it would be awesome to see the Big Apple...:) Have lot's of fun!!! Again I greatly appreciate both of you!!!!
Brocallie
11-07-2007, 03:56 PM
Michelle,
Where in AR are you? I have a friend with MG and MS (I can only imagine...) who is from there. Maybe she can help steer you to a good doc.
I am in Texas (rural Texas) so I hope to not look TOO much like I just fell of the turnip truck when I get to the Big Apple! I can hardly wait!
Take care!
Where in AR are you? I have a friend with MG and MS (I can only imagine...) who is from there. Maybe she can help steer you to a good doc.
I am in Texas (rural Texas) so I hope to not look TOO much like I just fell of the turnip truck when I get to the Big Apple! I can hardly wait!
Take care!
michellev1970
11-07-2007, 07:10 PM
I live in the Little Rock area, where is your friend from? I am sure I'd open my mouth in NYC and they'd look at me like I were an alien from another planet LOL I am sure you will have a blast :) I've always wanted to go there too.
Brocallie
11-08-2007, 12:36 PM
My friend was in Searcy, which is close to LR. She recently moved to TX, tho. She said Dr Dennis Lucy is top notch. She said to avoid Rudniski at the MDA clinic. LOL--I hope to not have any embarrassing moments in NYC.
michellev1970
11-12-2007, 06:53 PM
Brocallie, do you know if my ACHR test came back at a 6.1 does that mean I have MG or does it just mean that I might have? When my doctor first told me the test was positive he suggested ALS when I looked the test up on line all that came up was MG, I did read one very short sentence that read in rare cases it indicated ALS I seem to have more of the symptoms of MG rather than ALS. I know you can't diagnosis me LOL I just have such a long wait to see the neurologist and my breathing is getting worse I feel like there is a brick sitting on my chest and I can not get enough air into my lungs. I am sorry to ask so many questions and to vent like this, I am just so curious! When are you going to NYC?
Thank you!
Michelle
Thank you!
Michelle
Brocallie
11-13-2007, 11:42 AM
I don't know for sure, but I'd say, yes, that's indicative of MG. Your neuro will use that result along with the physical/neuro exam to place the final diagnosis, but you sound like a shoo-in for MG. :(
Your breathing concerns me. Try and take a deep breath and then begin counting out loud, in a "loudish" voice. If you cannot get to 10 before becoming short of breath, you really need to go into ER.
We leave for NYC on Monday. I infused some IVIG over the weekend and am miserable with side effects right now, but hopefully it will help me enjoy the vacation and have more energy.
Take care!
Your breathing concerns me. Try and take a deep breath and then begin counting out loud, in a "loudish" voice. If you cannot get to 10 before becoming short of breath, you really need to go into ER.
We leave for NYC on Monday. I infused some IVIG over the weekend and am miserable with side effects right now, but hopefully it will help me enjoy the vacation and have more energy.
Take care!
oscarjazz1112
11-13-2007, 07:19 PM
whomever has the diagnose o MG im sorry for you but at least you know what your dealing with i am 4 years into an undiagnosed neuro-muscular disease. I will say a prayer an keep a good thought for you.
Oscarjazz1112
Oscarjazz1112
michellev1970
11-21-2007, 11:26 AM
Thank you for the kind thoughts Oscar, I do hope they find what you are suffering with very soon!!!! Good luck in finding it!