Quote:
Originally Posted by cait24
Who do you see for your RSD? Is it the same neuro that is evaluating the MG? I would ask him what is the cause of your symptoms. Is it dystrophy from the RSD or possible systemic RSD? If your symptoms progress I would ask for a repeat on the SFEMG.
My emg on my legs has been abnormal since the injury that started the RSD 30 years ago.
Some doctors try mestinon to see if it improves symptoms. Responsiveness to mestinon is used as an indication of MG in seronegative patients. Getting diagnosed with MG can be a long process. It took me 2 years. There are many others here that took even longer. There are some here being treated with MG treatments (mestinon, prednisone, IVIG) that still do not have an official MG diagnosis. MG is rare and most neuros have never seen it and will not commit to a diagnosis unless they are absolutely certain.
Hang in there
kathie
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Hi Kathie! Thanks for responding. I was hoping that you and Annie would see my post
I am looking for a new pain management dr, the last one I was with is useless! He moved to a new practice and changed drastically. He doesn't have the same care and compassion he used to. He was a physical pain and rehabilitation dr (and spine guy). He was the one that implanted my two SCS's and I got someone else (neurosurgeon) to remove both of them in January. I do not really have a neurologist at the moment. The one who sent me for MG EMG's is a neuro-ophthalmologist. I saw a neuro in that practice in the past, well she was a NP, and she got really mean so I didn't go back. I switched to the Medical College here (MCV/VCU) and LOVED the guy I saw there, then his residency ended and he left. The guys I saw after him were horrible, idiots and they will not put me in with who the first guys recommended or an attending. So, I need to find a new neuro too.
My PCP wants me to ask this neuro-ophthalmologist that I saw if it is not MG, then can my RSD be causing this problem with my eye. Will the RSD affect the nerves so much that over time it will cause my eye to be so weak and droop? She told me "you ask him that because I want to know!" I saw her yesterday morning and the RSD in my face was flared up, my face was more swollen on that side and my eye was drooping. She hasn't seen my eye like that much so I showed her pictures on last visit. She agrees that something is definitely going on, we need to find out what so it can be treated accordingly.
I have been thinking about that IVIG stuff. I see that some with RSD have benefited from it as well.
I have a question - do they check numerous areas when doing the SFEMG?? This dr did two spots on my forehead. It was on my right side, which is the drooping eye side and the RSD side. It was hell!! OMG - torture!! My RSD flared up instantly, big time!! I cannot imagine having that done again
Thanks again for the info!!
Nanc
