Pretty sure I have MG
Hello! I have a long and complicated history so I won’t get too detailed with it. I have been trying to get a diagnosis for my muscle weakness and mobility issues since the October of 2017. I also have had 2 cervical spine fusions that complicated matters. I am 44 years old now. I have used a rollater/walker for the past 2 years on a consistent basis due to extreme muscle weakness and fatigue. My head literally just droops and I can’t pick it up.
My primary ran an autoimmune panel on my blood again and it finally came up positive for ANA and RNP antibodies and my sed rate was high. I was sent to a rheumatologist. He gave me a list of a few things that he thought it could be after seeing me, but he really felt like it was MG but explained a neurologist treats it. He ruled out the others but started me on steroids and referred me to neurology. The steroids helped a little. It was a small dose. He also tested my blood for the MG antibodies. On my one month follow up he asked me several questions about my symptoms. Told me my antibodies were negative but he said that you can still have MG with negative antibodies. He still believes I have it and I couldn’t get in to a neurologist until September. I asked him if it would hurt anything to go ahead and prescribe the medicine for MG to see if it would help me. I have been suffering a long time. He agreed and prescribed mestinon. It was like a miracle drug for me!! About 30 min after I took the pill I started noticing muscles “coming to life” for a lack of a better term. I could walk without the walker, in fact I did a light jog down my hallway! It only lasted 3 hrs and the symptoms coming back seemed so much worse than before.
I have not spoke to the dr yet. This was just yesterday. He gave me 60 mg 3 x per day.
I know you guys aren’t doctors; I was just hoping for some thoughts. I realize they are only your opinions. Does this confirm MG? I feel like it does 🤷♀️
And I have no idea what to do with this medicine that only lasts 3 hours. Save them for when I want to do something? Go ahead and take them every 3 hours and hope he gives me more? Lol I guess these last two questions are a what would you do? Type
I’m a little lost right now and my head is buzzing with thoughts because it is exciting but devastating to have your body somewhat back to just lose it over and over. I figured at least some of you could relate?
amandabu.... Wow you have a lot going on!! A positive ANA and RNP antibodies and my sed rate was high. From my understanding these have nothing to do with MG. So hopefully your rheumatologist does some more investigating. Many of us with MG as it is as autoimmune disease...... and when you have one autoimmune you can have others. I am seronegative MG and do find that mestinon helps me. And was how I was diagnosed, because of the positive response, I had. Hoping you can get some definitive answers from you Dr.s... Sometimes it is a long process, especially for those of us that as seronegative. Best Wishes!! Sally Farrier...Myasthenia-Gravis.com (team member).
My las neck fusion was at the Cleveland clinic, it’s 6 hrs away. I guess I could go there to get started. I didn’t think about that! Thank you!!
I don't know where you live but if you can, try to get into the Mayo Clinic. They actually have several locations around the US. It took me about three weeks to be seen by a neurologist there. They see a lot of MG and other neuro muscular diseases.
