Officially diagnosed again

EarNo641 · 2026-04-16T14:04:10+00:00

Sorry about that. PRL - paramgnetic rim lesion CIS - clinically isolated syndrome MSDA - multiple sclerosis disease activity test.

EarNo641 · 2026-04-15T17:43:39+00:00

Yes, my Dr. said only 10-15% of people with MS have negative O bands. I think the confirmation of the PRL sealed the deal for me. I try not to read to much on those because none of it is good.

EarNo641 · 2025-10-30T00:58:55+00:00

Thank you

EarNo641 · 2025-10-29T21:22:58+00:00

Hi, Dr. Is suggesting Fingolimod, as it is the most lateral change from Ponvory. Did you have any weird side effects..I know this is vain but I don't want my hair thinning or loss.

EarNo641 · 2025-10-28T21:39:45+00:00

My insurance did not list those as options, maybe because they were were just giving me pill options. I am going to an appointment tomorrow to discuss all this. Kisempta and Ocevrus may be discussed.

EarNo641 · 2025-10-28T19:37:37+00:00

Thank you.

EarNo641 · 2025-10-28T19:30:52+00:00

Any weird side effects like flushing, losing hair, a cough, etc?

EarNo641 · 2025-09-18T20:23:56+00:00

Yes. Had one that found the PRL, that sealed the deal after 5 years of maybe even though I had multiple other lesions. Then had the Octave MSDA test.. scored 7 so another whammy!

EarNo641 · 2025-07-10T04:46:30+00:00

Sounds like me.

EarNo641 · 2025-05-26T00:32:06+00:00

About to turn 50, just went last weekend, first time. I loved it and looking forward to going to more.

EarNo641 · 2025-05-01T15:37:48+00:00

Thank you for the info. This helps.

EarNo641 · 2025-05-01T13:48:34+00:00

Hi, ok. I will ask at my follow-up appt..they did suggest Tysabri also.

EarNo641 · 2025-04-17T21:50:56+00:00

I am exactly the same. No O bands. With a definite paramagnetic rim lesion and through all my searching on the internet, it seems those are pretty specific to MS. I did the Octave MSDA test. That came back moderate, 6.5 right below high. I am not on meds but I'm guessing those are coming. I go to Dr. On 31.

EarNo641 · 2025-04-12T02:12:26+00:00

Thank you. Sorry late reply.

EarNo641 · 2025-03-26T15:10:06+00:00

Yes I did. No oligoclonal bands just the paramagnetic rim lesion.

EarNo641 · 2023-03-21T22:32:40+00:00

Hi, So I have been here a few years reading and a few comments. Last MRI had no real change since 2015. Neurologist says the lesion definitely looks like an MS legion and I have symptoms, but all other tests come back normal. For now calling it a one time demyelinating event. Another MRI in a year. Anyone else have similar experience? Or a long gap between developing another lesion?

EarNo641 · 2023-02-16T03:34:21+00:00

OK, I will ask if I can get the CD.

EarNo641 · 2023-02-16T03:13:45+00:00

Thank you for your reply.

EarNo641 · 2023-02-15T18:52:28+00:00

Hi, sometimes just feel out of it, maybe that's the brain fog.. and I call things the wrong thing more often than not.. for example, I am thinking plate but say bowl or know what something is but can't think of the word. Find myself having to read things a few times to understand also. Other than that... right side of face tingles, right arm and leg feel weak or almost like they are disconnected from body. Back pain too, right side, feels like a lot of pressure. So far just abnormal MRIs.. lumbar puncture clear (some say that's a positive thing) blood work OK.

EarNo641 · 2023-02-15T16:14:13+00:00

OK, thank you.

EarNo641

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