May 19, 2014
Hi, for around 3-4 years I have seen a succession of neurologists who say I have NMO, and others who say I have secondary progressive MS. It is quite confusing, I'm pretty fluent with the symptoms and treatments, I'm just curious has anyone else been in a similar situation? And if so did you ever find a conclusion? Thanks!
October 28, 2014
Hi, Chris. Yes, shortly after my MS diagnosis I changed doctors, because my first neurologist was a jerk. Anyhow, the next doctor was an MS/NMO specialist who felt that my symptoms were more likely NMO than MS, mostly because of the presence of 2 lesions on my spinal cord & the presenting symptom of optic neuritis. He was a really good doctor & a very nice person, but unfortunately decided to move back to India somewhere between my 2nd & 3rd visit🙁 Hope you get it all sorted out! Cathy
December 21, 2014
I was suspected of having NMO several years ago but the Mayo Clinic has a blood test available at this time and mine came back negative. I have so many weird symptoms they thought I might have a disease called Lambert Eaton Myasthenia Syndrome but of course my test for that was negative. My Sjogrens test also came back negative until I insisted on a lip biopsy which proved most definitely I also have Sjogrens. I am headed down to the Mayo because I overlap every speciality and no one knows how to treat me. I have all the normal MS symptoms plus others like complete autonomic neuropathy failure etc. I have been very angry and frustrated but I saw my immunologist whom I have only seen twice in the last year and he was rather po'ed at the other docs for taking me off medications that helped me. They wouldn't treat unless I has a particular disease DX. Dr Shapiro says I do have Sjogrens 2ndary progressive MS but he feels we will never figure out the extent of immune damage going on in my body. His conclusion was what I need. Treat the symptoms with what works and the heck with test results. Good Luck.
October 2, 2020
I have recently been diagnosed for NMOD and wanted to check with anyone if there was an NMOSD specific discussion forum?
My blood work showed positive for APQ-4 antibodies that sort of sealed the deal for me.
Besides the question on NMOSD discussion forum, I’d like to check with anyone who can provide me with some of their thoughts.
1. I had symptoms of burning sensation, tingling and numbness in my left arm, that became very painful within a couple weeks. MRI indicated myelitis around the C5/C6 of the cervical area. Upon further blood work, NMOSD was established as the reason. Does anyone disagree knowing I don’t have any vision problems?
2. I have been rx'd - 1g of Prednisone for 5 straight days every day, followed by tapering it to 100mg, 80mg, 60mg every 5 days. Is this a regular practice these days for NMOSD?
4. The excruciating pains went away after the 1st day but returned back (mild pains in both the arms) when I was on my 2nd day of 100mg pred. This is concerning, but even more concerning is the doctor asking me to take 360mg Gabapentien 3x a day, which is insane in my mind. But what do you folks think?
5. My neuro also mentioned during my 1st visit of Retuximab to shunt the IS down significantly. But did not say when this will be introduced.
6. Are there NMOSD specialists out there in UCSF or Palo Alto area in California?
I am very concerned. Can anyone please help with the above questions?