The Beginning of My SPS Journey

[@DW-pm6dd]

I am shocked at how much our stories sound alike. It would take me too long to write everything down but quickly, I had mono at age 40 and never completely recovered even though I got into the best physical shape of my life. I became a "body builder" and lived in the gym because I was. fighting to get back to normal. During this time, I couldn't walk up a flight of stairs and I was having weird tightening in my forearms. I was diagnosed with fibro/cfs. By 50, I could barely stand due to dizziness and by 55, I started having extreme blurriness in my vision. I would freeze when I walked. I got so sick I lost 40 lbs in a few months and then the doctors started to take me seriously. A rheum at UM figured me out and sent me to the neuromuscular doctor there who spent two years before giving up on diagnosing me. My GAD and EMGs were all normal. I found another neuro who agreed with my rheum based on symptoms and got me the right meds and for two years I felt so much better. I recently went to a neuro optholmologist that my regular optholmolosit sent me to. He did blood work and finally my GAD was 75 when >5 is positive. I go back to him September 1st because my vision is deteriorating. Excuse my typos because I can't see well. I just switched from IVIG to SubQ and so far, so good. It widens my eyes (they droop terribly) but doesn't help the blurriness. I am anxious to hear more of your story because I feel like I am listening to my own. I pray my eyes don't get as bad as yours. I am so, so sorry about your vision.

[@myspslifewithasideofblindn6079]

Wow. Thanks for the comment! I’m sorry that your struggling too, but am glad to see somebody else fighting against the odds. Blindness posts will be coming soon, but good luck at your appointment on the 1st.

[@DW-pm6dd]

@@myspslifewithasideofblindn6079 I went to the excellent doctor and he says there is no doubt I also have seronrgative Myasthenis Gravis. He started me on Cynbalta because he says it has been shown to help with muscle and nerve pain but to conyinue with my other neds. He scheduked me for an EMG but not until Nov. 5th. I'm not sure what the plan is from there.

[@carolinerobert60]

@@DW-pm6dd Wow! Similar story here! My anti-gad are at 40ish and EMG normal. Very hard to get diagnosed. Thank you for sharing your story as well. Wishing you the best.

[@Tiffany-wc6uj]

Just went to strong hospital this weekend this weekend I live in upstate and they are failing me as I'm getting worse , currently constant spasms , locked up , extremely sick to my stomach , weight loss , hearing issues, chest starting to lock up....you name it the works!....I'm hoping for better treatment as I saw a neuro and will see Neuro muscular soon . Diagnosed with isaccs syndrome in may , strong thinks stiff man as well as my primary care

[@myspslifewithasideofblindn6079]

I will keep you in my thoughts and maybe if covid ever ends we can make a real connection. Thanks for the support!