-
Hello Jeaninne, I am so sorry to hear this. I am eight yrs into a seronegative diagnosis. I have questioned my diagnosis off and on. My MD has only recently questioned it. I feel like I have a combination of MS, MG and ALS. This rare group is very frustrating. Only taking immunosuppressants is just putting a band-aid on the situation especially seeing all the new meds available in recent yrs. I have been very uncontrolled for 2 yrs. Just switched from Cellcept to Imuran with some relief. I usually continue increasing dosage until it finally doesn’t work anymore. I take 540mg Mestinon over 24hrs & I have never been able to reduce that dose. I had plans to speak to my MD about the biopsy but with med changes and questioning a diagnosis I did not rock the boat. I plan to discuss this in June as well as work on a second opinion to try to maybe repeat some testing that hasn’t been done in 8 yrs as well as new types of tests to get some kind of answers. If I were to stop all treatment, I would not be able to move at all. Please consider finding another physician. I know depending on where you live these specialists are far and few. I will post on this thread if I get any new information that could help you but it may be a few months. You can also ask about genetic testing through Athena Lab. Your MD would have to set that up. I did two different panels in two different sessions. One with blood and the other with saliva. Unfortunately my results were negative or inconclusive. They offer payment assistance with what insurance doesn’t cover. That has assisted some patients with a diagnosis of something. I wish you the best.