possibly diagnosed with MuSK MG and confused/scared
I am a 34 year old woman in New York and for the last 7 months, been having strange symptoms on and off. It started with my arms/legs tingling and then that went away. Then I noticed when eating, it felt like chewing was exaggerated and difficult. I'd be walking outside and out of nowhere, I'd feel a "wave" come over me and I'd feel weak and have to sit down. I'd also get dizzy when turning my head to look at times.
I saw a few Neuros and they ruled out MS. They said it could be anxiety, since I do have bad anxiety, and that could be the cause of the symptoms. I started meditating and taking anti-anxiety medicine and started feeling better. I was taking long walks again and all was well. I still had an appointment scheduled a month later for a Neuro-opthamologist so I decided to keep it just to see his opinion. He tested me for vestibular conditions and said everything was fine. He said "you have no issues from what I can tell. I can test you for Myasthenia Gravis but you don't present that at all and I highly doubt it's that, but let's check anyway".
The results started coming back in and they were negative. The last one was the MuSK antibody and that took about 2 weeks. I got a call from the doctor last week saying "Your MuSK antibody came back 2.81 and over 1.10 is considered positive." I was floored because I was not expecting it, nor was he.
I took the results to the 2 Neuros I was seeing for months and both of them are saying they can't see me having it. One of them even wrote a script for me to take the MuSK antibody test again because she is doubtful of the diagnosis.
That leaves me with questions such as is it possible my MuSK level is only slightly above the norm and not true positive? I really don't know the normal values people get when getting diagnosed so I don't know.
By the way I am 73 yrs old
I'm in the UK . I've been diagnosed with MG for 3 months ..I had the blood tests and all came back negative so was diagnosed on the symptoms which were double vision and droopy eye lids one eye was closed for 4 weeks ..was put on Pyridostimine and both eyes back to normal now ..attended eye clinic for 3 assessments I also had a migraine type head ache which lasted fro 7 weeks .was but on beta blockers and these havetotaly gone . I now have aching muscles am trying to keep active and have plenty of rest and take Ibupofen but will not see my nuro surgeon until Aprril I was diagnosed 2008 removed my cancerous thymona but never had symptoms only had the antibodies I’ve been to at least 3 neruo dr. Just gave me musclerelaxer(nevered helped) had spasms for past 2 yrs. I had the emg test was fine .but had to lift legs in car to drive had a large rash no one knew what is was ! All of a sudden Feb 2022 I couldn’t hold anything then I was slurringwords went to hospital they said no stroke go home! I even fell out of bed and couldn’t get up And I couldn’t hold up my neck for 2 wks. Neruo dr. put in hospital. Had 10 plasma aphersis didn’t help. Finally went home after 16 days My voice now is giving me problems I sound like Mickey Mouse So now still tired. But able to walk and chew food slowly dr put me on 60 prednisone and mestion which is helping right now. I want to stay on since it’s helping I will see what happens but so scared also! I also got double vision for 2 weeks this happened very fast to me I get double vision at about 10 PM every night. It makes me dizzy when I walk and I can't read anything. I've just gotten used to it but it's kind of annoying.
First, please try not to be scared. I agree with Jazmin that it is really unfair to leave you in "limbo"--but the diagnosis of the condition can be like that. Very good neurologists sometimes have to "read a variety of tea leaves" to try to figure out what your body is reacting to. Often it ends up that "what works" is what they use for the best diagnosis.
There's a lot you can do while further tests are done. First, take really good care of yourself. Try to avoid a lot of stress (physical and mental). Eat well, exercise moderately, and do what you can to stay positive. Early in his diagnostic journey my husband's respiratory doctor re-assured him that this condition is almost always "beatable." From my observation, the hardest part can be figuring it out at the beginning.
As you participate in this community, you'll see a lot of caring people--those that have MG and their advocates. You'll find a lot of valuable advice. Try to avoid spurious posts in unmoderated groups. They can do more harm than help.
Keep in touch. You can message the team for reputable sources and links too. We care. Juliana (Team Member)thank you
