Last reply 1 month ago
Been a while…

Hi Shifters! Things been quiet with me till I saw the MS specialist rather than my regular epilepsy guy yesterday. I’m going for another MRI and LP based on my doubts of whether or not I do in fact have MS which was always described as benign by epilepsy dr. @stumbler that reminded me of you saying there’s no such thing. He suspects inactive SPMS based on my dodgy dexterity and that wonderful test of walking in a straight line. I’ll update with results….Still feel lucky as I feel well 😏 and I now have two consultants haha

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stumbler
9 months ago

@novemberrain , hmmm, another oxymoron, inactive SPMS. Surely that would be SMS? 😉

I’m sure you’ll let us know if the scheduled tests show anything.


novemberrain
9 months ago

Well there could be lesions that decoupled during a viral infection. A second MRI will show if there any new lesions. The oligoclonal bands from l.p. I will of course let u know!


novemberrain
9 months ago

Developed not decoupled. Basically old damage. My symptoms aren’t worsening.


novemberrain
1 month ago

Update…Diagnosed with inactive non progressing MS @stumbler you’ll love this! They only measure over 12 months and as there are no new or worsening symptoms at this moment in time thats the diagnosis. For now….
No new lesions seen on MRI over 3 years. Oligoclonal bands suggestive of MS. Neuro thinks all those lesions arrived at a single point in time when I had optic neuritis in 1997.
Annual check ups for me unless changes occur…


novemberrain
1 month ago

novemberrain
1 month ago

stumbler
1 month ago

@novemberrain , and there was I thinking that MS was an incurable, progressive, degenerative condition. I wonder which of those words that they don’t understand…….


novemberrain
1 month ago

https://www.mstrust.org.uk/research/research-updates/update120308- people-with-non-progressive-ms-60-years-after-onset


novemberrain
1 month ago

Im not progressing. Static. Dont know why they’ve given me the spms label. You have to attach inactive non progressing in there for clarity 😚. It is a phenotype of its own…


novemberrain
1 month ago

I remembered why I’m labelled spms. Because it’s been 20 years since optic neuritis. That was the relapse (RRMS) now I’ve been upgraded to a condition that bears no resemblance to my situation…sobeit


stumbler
1 month ago

@novemberrain , so you’ll know if their diagnosis is correct after…………….58 more years! 😂😂😂


novemberrain
1 month ago

Correct @stumbler 😂 hope you’re doing ok…

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