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NMOSD

Hello,

I have new and 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?

7. Like MS is there a community discussion support forum for NMOSD?

I am very concerned as some new symptoms developed today - mild tremors, felt like an earthquake, three times since today morning. Can anyone please help with the above questions?

  1. Hi @munna, I am so sorry that you haven't gotten any responses yet to these great questions! I'm afraid that we didn't have a forum discussion on this topic before yours, and I'm so glad you started it because this condition can often be confused for MS and we've seen a few other community members seeking more information as well.

    I want to share a few articles with you that discuss this condition and the problem of misdiagnosis in general –
    https://multiplesclerosis.net/living-with-ms/the-spirit-of-louisville/
    https://multiplesclerosis.net/living-with-ms/misdiagnosis-and-mystery/
    https://multiplesclerosis.net/living-with-ms/ms-many-mimics-makes-ms-special/
    https://multiplesclerosis.net/living-with-ms/what-is-it-like-to-not-be-diagnosed/

    Also, I did a Google search and found some in-person support groups as well as Facebook groups for NMO here - https://guthyjacksonfoundation.org/support-groups/ It looks like this organization may also be able to help connect you with a doctor in your area.

    Hope this helps and that others in the community familiar with this condition will also chime in.

    Thinking of you!
    Shelby
    MultipleSclerosis.net Team Member

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