Waiting Sucks
Hello!
I haven’t been officially diagnosed but I think it might be right around the corner. I’m waiting on some bloodwork and my follow up is on Dec 1st.
In 2017 I started feeling extremely run down and my hands hurt so much I couldn’t hold a pencil. My primary doc referred me to a rheumatologist and ever since I’ve been on a boat load of medications to treat random symptoms as they’ve came up.
The last time I went to the rheumatologist and told her that my lower legs were becoming weak, and I was having constant nerve pain. She threw up her hands and said she didn’t know what to tell me. That was when I could feel that she was thinking I was crazy.
Finally after a routine physical my doc referred me to a neurologist and I started seeing them at the end of October. Her first impression of my symptoms was MS but the MRIs didn’t prove that so now she’s testing me for MG. Monday I had an EEG and bloodwork and now I’m waiting but still degrading.
Now both eyes are barely opening. I’m physically incapable of walking even with assistance more than a few steps. I’m exhausted. My voice dissolves Into raspy whispers after a few seconds of talking. I have continuous nerve pain in my lower legs.
I’m definitely not crazy, at least not for this.
How did you get through the wait for results?
OMG yes..it was non stop doctors to find out what was going on. Thankfully i have a supportive husband to drive me all over because i couldnt see very well. I was diagnosed 3 mo. later. i just researched alot and this helped me. the symptoms are all over especially face area..I'm 71 so I say....well it could be worse, I have to rest alot, (which is hard for me) but i still continue on and do fun things with friends..Be positive and life goes on..
I'm so glad to hear you have a supportive and loving husband. <3 Having supportive loved ones can be so incredibly helpful. It sounds like you maintain a positive attitude and incorporate time with friends to have fun! I love that! How are you this week? I hope it has been kind. Please don't hesitate to reach out anytime. We care and are here. -Jessica, Team Member
I am so sorry you are going through this!! I do know how frustrating it can be!! It took 46 years for me to get a diagnosis & treatment started. I am seronegative MG meaning nothing showed in my blood work. I also had a negative SFEMG. But the symptoms & the mestinon help me. Along with the ice test for ptosis (sagging eyelids, it is a test for MG just as accurate as a SFEMG. One can have a negative to either one... but not both). You have described many of the same symptoms I have/had. I can truly feel for you!! I was told that I had MS for many years. Turned out to be MG & a Chiari Malformation and lots of other stuff too. I do hope that the MRIs included the full spine and not just the head/neck. There are so many different conditions that can present the same or similar. But Joni Enders is correct in saying to relax the best that you can!! For any health issues!! Hugs and best wishes!! Sally Farrier... Myasthenia-Gravis.com (team member). 
Hey Amy! That is wonderful you have found a doctor that is testing for MG! Best wishes to you and that you receive some answers. The eyes really sound like MG. Just know that relaxing is the best thing you can do for your body. Try baths if you can tolerate them, but no Epsom salt, as it can worsen symptoms. Ask the doctor if they can prescribe Mestinon. If it works, you most likely have MG. Sometimes it doesn't work, and you can still have MG, but it helps diagnose many people while tests are waiting. If it works, it can get the ball rolling for coming up with a treatment plan and possible IVIG to help your symptoms decrease during this flare.
- Jodi, Team Member
We are so happy you have found our community. Please know you are not alone here! One of our health leaders, Juliana, wrote an article about what to do while waiting for a diagnosis that I think you'll find helpful: https://myasthenia-gravis.com/living/diagnosis-steps. I also think you'd find comfort in reading others' diagnosis stories: https://myasthenia-gravis.com/search?s=diagnosis Since it also seems you have experienced some gaslighting in your diagnosis journey, you may find it helpful to read through this forum thread: https://myasthenia-gravis.com/forums/gaslighting Please keep us updated on your progress. Sending positive thoughts your way! Hugs, Kaitlyn (Team Member)
