Anyone seronegative & had a Muscle Biopsy?

[tia lynn]

I am seeing my neurologist tomorrow and will ask him!

[Jeaninne]

I was just reading articles about muscle biopsy.  After seven years of treatment including IVIG treatment and  CellCept.

my neurologist decided I don’t have MG. So stopped all treatments. With out anything else suggested.
I am seronegative. So I would be interested in hearing more about it.  Is it expensive and hard to get an orders for?

since discontinuing my treatment and oral meds. I’m getting steady worse.

[Leigh]

Hello Jeaninne, I am so sorry you are going through this. I was diagnosed 8yrs ago with Seronegative MG after ruling out MS. I have questioned my diagnosis off and on but only at my last appt. has my MD questioned it. I feel like I have a combination of symptoms of MG, MS and ALS. I am a very black and white person and need a concrete diagnosis although I have realized that is probably not going to happen. I have been very uncontrolled the last 2 yrs and had to stop working. I just switched from Cellcept to Imuran with a little bit of relief. Only being able to take immunosuppressants is frustrating and only putting a band-aid on the situation. I had planned to speak to my MD about this in Feb but with treatment changes and questioning a diagnosis I chose not to rock the boat but plan to in June as well as seek out a second option for any testing not done as well as possibly repeat testing done 8 yrs ago. I have spoke to people with MS not diagnosed for 10+ yrs. My MD thinks I would of had positive results 8yrs ago. I would like a scan of my neck and spine. Its possible to see it there and not just on the brain. Anyway, I would definitely seek out another physician. I know depending on where you live they are far and few. Also, ask about genetic testing through Athena. Your MD would need to set this up but results have helped some patients. Mine were negative and inconclusive so no help there! If I were to stop all treatment, I would not be able to move. I cannot believe you weren’t given an alternative or referred to another specialist. I will post on this thread about the biopsy if I find anything out about it. I wish you the best.

[Leigh]

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.