mg diagnosis or misdiagnosis?
after trouble swallowing then muscle fatigue in the legs and neck and shoulders it took 2 years for some kind of diagnosis. j After blood tests showed no acetylcholine receptors I was told I had MG. The symptoms all matched-muscle fatigue & weakness, trouble swallowing, issues climbing stairs etc. I went to 5 neurologists and even spent a week in Minnesota at the Mayo clinic and no other doc diagnosed me with MG. I had several painful emg test and nothing conclusive. I went back to the doc that diagnosed me and he said I have generalized refractory exacerbated MG. Initially he had given me prednisone and mestinon and they messed me up so bad I was thinking suicide. MG is not a progressive disorder but I keep getting worse.
I am coming to this thread a bit late but it leaves me so concerned. First, we need to close our circle around those struggling for clarity. MG isn't a straight path, even though remission is very frequently a practical goal. Somewhere upthread there is another clue: prednisone. It can be a quick (and in my hubby's case, almost miraculous) quick remedy and diagnostic tool. But it is really rough on a person's system, as we all know. In my own case I had to learn early on that sometimes "it's the drug talking." PLEASE keep the thread going and help all of us help one another more. Juliana (Myasthenia-gravis.com team)
thanks for responding. the suicide thoughts were mostly caused by the prednisone. Though I do think a lot about death, mostly because so many people that I knew have died recently. Relatives and childhood friends mostly. I myself have had an out of body experience thanks to a hospital overdosing me with insulin and then recently the same thing happened but I did not succumb totally. Seems as though the Lord wants me to stay on earth. Anyway, my symptoms appear like MG but the tests do not. I guess it really does not matter as MG, IBM. ALS and MS have no cure. With the progression it seems I am eventually headed for a wheelchair full time. The difference is that whatever I have seems to be targeting my legs though I do have muscle fatigue all over as soon as I initiate any muscular activity. Being able to swallow remains an issue as well. So much frustration and so few answers.
I'm so sorry for your loss and for what you experienced at the hospital. It sounds frightening to go through and experience like that. We hear you and totally understand your frustration. I hope you are able to find the answers you deserve. This community is here for you and is always here to listen. Hope you have a gentle day. Best, Lauren (Myasthenia-Gravis.com Team)
Hi
- Thank you for feeling comfortable sharing this experience with us. I can’t imagine how challenging it’s been trying to find answers. With changing, unpredictable symptoms, MG can be really difficult to diagnose and is sometimes misdiagnosed. I’m so sorry you have been dealing with fatigue, weakness, and trouble swallowing, along with inconclusive tests. It’s a lot for anyone to handle, and we understand how going through this could lead to suicidal thoughts. Please know you are not alone and others here can relate to the daily challenges of this condition. We have heard from others in this community who share that they have had to work with their doctor to adjust the dosage, timing, and type of medication - especially in refractory MG. I’m sharing an article that talks more about refractory MG and one that talks about other treatments for the condition. If you’re comfortable doing so, please keep us posted on how you are feeling.
Sending warm thoughts,
Lauren (Myasthenia-Gravis.com Team)https://myasthenia-gravis.com/clinical/treatment-refractory
https://myasthenia-gravis.com/treatment
