hi
 

Hiya,

Seronegative means that I don't show that I have any antibodies in my blood, either on Achr or Musk. Which means its a nightmare getting a diagnosis! Im also negative on SFEMG (electrical tests). I had a tensilon test, my ptosis resolved for over a minute and my speech resolved for over 5 minutes but the Drs interpreted it as a negative test. I respond to mestinon, but apparently thats not good enough!

Im now waiting to see a Prof. in London at the national hospital of neurology.

Currently my "diagnosis" is Chronic Fatigue Syndrome or Central Nervous system Plasticity. Both of which are a load of rubbish. Neither of these "conditions" would respond to mestinon.

I present as classical MG, its just my labs don't back it up and basically until they do my life is slowly passing me by as they won't give me anything other than Mestinon, which isn't enough. I was on steroids for 8 months and did an awful lot better until it was decided I didn't need them. I would jump at the chance for a treatment of MG, whatever the risk as my quality of life is so poor at the moment.

Love
Rach

Hello
 

Hi, my name is Kisha

before i start the story, i apologize for my bad english, so if somebody don't understand what i'm meaning, just ask. thanks before :D

hello,

i have a cousin and today the doctor said that she got MG. About 1,5 years ago, she said that she had a problem for speaking. her voice going to vanish each time i see her. we already see a lot of doctor. some of them just said nothing, some give her a medicine, we also go to alternative medicine care, but until today, we got a specific what kind of sick that my cousin have.

Now, my family got a lot confuse what kind of treatment we have to do. is there any recommended for my family so we know what to do ?

some people suggested us to do acupuncture treatment, but we don't know which acupuncture doctor that good to treat this disease.

please, can you help me ?


thank you very much

Love,

Kisha

Hi Kisha,

Welcome to the group! I think if you start a new thread you will get more responses as it will be seen by more members. First off I have to ask you a few guestions before I can answer yours. Is your cousin being seen by a neurologist who diagnosed her with MG? What medications did he/she put her on? Does she have any other symptoms besides her speech? If you could please answer those I would love to help you in any way that I can as everyone here would. Take care and hope to hear back from you.;)

Hugs,
Pat