New emphasis spinal tap (again) to diagn... - My MSAA Community

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New emphasis spinal tap (again) to diagnose MS

erash profile image
9 Replies

This is likely most relevant to those in limbo withOut a diagnosis. Reading this article it sounds as if there is still much confusion

medpagetoday.com/MeetingCov...

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erash profile image
erash
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9 Replies
cheshcat profile image
cheshcat

Thank you @erash for another wonderful article! I really appreciate you are always on the look out for science backed articles and information.

It's probably a silly (obvious) thing to say but I wish MS wasn't so hard to diagnose.

I can't remember if I posted this but I read an article that said it takes an average of 5 years and 5 doctors to be correctly diagnosed for an autoimmune disease. So anything to move the process along seems helpful!

* where I read the 5 years ( psmag.com/social-justice/is... )

StacyHayward profile image
StacyHayward

I'm a little disappointed with this decision. I think patients will be in limbo longer and therefore not on treatment that potentially could have significant impact on disease progression.

My spinal tap was negative and my MRI inconclusive. Fortunately I had an amazing neuro willing to assess my symptoms every three months. Within ten months he determined without further testing that indeed it was MS and started me on treatments. I fully believe that is why I've done so well.

I can't imagine where I'd be if I'd been forced to wait for all the testing to line up perfectly. My MRI now is a clear cut case for MS, but I didn't have one for ten years after my first one due to costs. I don't know how long it would have taken to get those results.

greaterexp profile image
greaterexp

Thank you for always sharing new info!

WAshingtongirl profile image
WAshingtongirl

Interesting article, erash ! The LP sealed my initial diagnosis years ago. Thank you. 💕

Bamfan1442 profile image
Bamfan1442

Thank you erash for this article! Took me quite a while to finish reading it, got distracted and couldn't focus with the neighbor's lawn mower racket next to my window and had to look up many medical terms since I couldn't pronounce them or know what they meant ;-) lol. I am hoping that the PCP and/or neuro I'll be seeing, hopefully soon, will be persistent in performing the appropriate tests necessary in either diagnosing or ruling out MS. I am ready for an answer, no matter what the news.

kdali profile image
kdali

I'm for it! I'd rather be tapped than told I have MS and started on DMDs, when it's really something else.

melack01 profile image
melack01

My neurologist was still unsure whether he wanted to diagnose me. After the spinal tap he diagnosed me. I had 9 OCB's in the spinal fluid and none in the blood.

Manos profile image
Manos in reply tomelack01

Many thanks to @erash for the interesting article. The article (see especially cases 2 and 3) proves that the diagnosis of @melac01's doctor was correct. it seems that the presence of OCB's in the spinal fluid and not in the serum (blood) is a positive sign of MS.

I had a spinal fluid test 2 years ago. It was found that I had 10 OCB's in the spinal fluid but unfortunately my neuro did not tell me anything about OBC's presence in the serum (blood test).

I do not want to do the spinal fluid test again and since the diagnosis was RRMS, I am now in DMT therapy with Copaxon and it seems that if the weather is not so humid and hot outside I am getting less MS symptoms (fatigue and foot drop problems).

All the best to our good friends in the forum.

Manos

kdali profile image
kdali

I didn't realize the standard was just not testing CSF if they only saw one lesion.

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