Unnumbered post Am I missing somethin... - My MSAA Community

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Unnumbered post Am I missing something 15 Aug 2020

RoyceNewton profile image
24 Replies

Can not ms be diagnosed without a Lumbar Puncture? Mine was 20+ years ago. MRI and evoked potentials to confirm it. As everybody knows I do not like needles so I am confused as to why people have to go through this. If "YOU" know why please explain it to me as I am curious

Royce (your ms writer)

Thank you for the education

24 Replies
Kenu profile image

When I was diagnosed over 26 years ago it was initially ms lesions behind my right eye. Sent to Moran Eye Center in Salt Lake City Utah and a lumbar puncture was ordered to confirm. It was probably a year or so later when MRI’s were done showing more lesions head and spine. Don’t know but seems like now they do MRI and then confirm with puncture? So, not sure 🤔 other than confirmation. 🙏😊 Ken 🐾🐾

RoyceNewton profile image
RoyceNewton in reply to Kenu

thanks, still do not see the point when MRI is so cheap and plentiful these days, seems like a pointless needle to me

Elle61 profile image
Elle61 in reply to RoyceNewton

I hate needles too . I was Diagnosed 40 years ago , they didn't have MRI machines then. I had my diagnoses the next day . I had my first MRI 20 years later . I'm glad I didn't have to go through months and many tests to get the final DX , that would have been so hard to deal with. elle61

RoyceNewton profile image
RoyceNewton in reply to Elle61

Same here I think thenon stop questioning would be hard

kdali profile image

I’ve never needed any other testing to rule in MS, it was obvious from my eye exam and history. The MD ordered MRIs just to prove what he suspected. The neurologist said she only did LPs when necessary. Her exam (my exam) was also crap and it matched my crappy MRIs 😬 I think the other tests depend on if you are at a university hospital/MS clinic using blanket protocols or if the MS evidence is weak and they need something else to in good faith make the diagnosis. Just my guess.

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to kdali

I, also, had a 👪 hx- my mother had MS. My first sx was nystagmus( rapid eye movements) , so "they" didn't have far to look- I was confirmed @ age of 27 yrs old.


RoyceNewton profile image
RoyceNewton in reply to Sweetheartonvdayl

I think I survived until 29 first doctor said it was trigeminal, neuro confirmed it, needles from there for 10 years or so, now Tecfidera

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to RoyceNewton

Are you 😟 about PML??? Before, I was on tecfidera, I was on tysabri iv 1x/mo , for 7 yrs. & was taken off tysabri IV d/t testing positive for the "virus", put on gilenia ( forgot how long???), & had numerous MS attacks, then I asked for tecfidera. Now, I was told to ACCEPT that I can have up to 1-2 attacks every 2 yrs!

I say it's the " mindset " because I always come out on top!!!

Just had to share.


agapepilgrim profile image

I was diagnosed without the lumbar puncture. If asked I would have said NO WAY!

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to agapepilgrim

Yes, I also was dx w/ MRI. I would NEVER get a lumbar puncture!!!

I know how it feels when you lose CEREBRAL SPINAL FLUID. Make a long story short,you get a headache for 7 days-& the only thing that helps is when ya lie down!

Well, that incident, made me AGAINST, spinal taps!!!


Elle61 profile image
Elle61 in reply to Sweetheartonvdayl

I had one 40 years ago . Spent the night in Hospital laying flat, never got a headache. My Doctor must have been good at extracting the dye back out of my spine which is what causes the headaches. I always liked him ...he was my Doc for 21 years , then he retired.


Sweetheartonvdayl profile image
Sweetheartonvdayl in reply to Elle61

Hi Elle61😊

My, epidural, was given by my " pain mgmt Dr. He FORGOT I had MS !!! Did you know , that if you will have an increase in cerebral spinal fluid- when you have MS???- well I didn't!!!

(By the way, he's 👎 longer my Dr anymore!)

🙏❤ Lisa💕

Frances_B profile image

LPs are an extra diagnostic tool used when other tests done (MRI, evoked potentials, etc) are not conclusive enough for a clear diagnosis.



In any case Royce - you know how to look this info up on any of the legitimate MS society websites around the world - all you have to do is use your mouse or keyboard and it's only a few clicks away........... and you did post this same advice (i.e. use the MS society websites) to newbies only a few days ago!!!


Where you said "if "YOU want ms info, most any ms info go to themsAA website, NmsS website, msWorld website your national ms website"

RoyceNewton profile image
RoyceNewton in reply to Frances_B

I was just curious I know what the websites say, I wondered if the experts might know of a different reason, so I asked the experts, like I said just cvurious

Frances_B profile image
Frances_B in reply to RoyceNewton

The medical and scientific experts' rationales for doing tests, and their opinions/ explanations are what appears on the society websites, what gets written here is the lived experience of real patients. Both have something valid to offer, but the two are quite different.

cheilke profile image

When I got the lumbar puncture over 20 years ago I had never met the doctor who did the procedure. He was a recent immigrant and barely spoke English. He was humming whilst approaching with the enormous needle. I don't know what words went with this tune in his culture but in ours he was humming "Pop Goes the Weasel."

RoyceNewton profile image
RoyceNewton in reply to cheilke

to funny

Ali_B62 profile image

34 years ago, after eye problems and problems moving my left side along with severe fatigue, mine was diagnosed using Visual Evoked Response, CT scan with dye mainly. I had a LP but I am guessing since they made quite a mess, the sample would have been contaminated. As I have moved around the UK, it doesn't seem possible to track the results down and I wouldn't have another after that experience. Luckily, MRI is able to confirm.🙂

bxrmom profile image

When my vision suddenly went blurry 14 years ago, I had to see an opthamologist who couldn't find anything (tried to say it was rx that I had been taking for a VERY long time). Told him nope, so he sent me for an MRI of my brain and that 'showed signs of MS' and after seeing a Neuro, he wanted more testing. All tests other test except spinal tap showed nothing.

hairbrain4 profile image

I think it depends on the doctor. My doctor was an MS specialist. He ordered 4 different tests for me, one of which was a lumbar puncture. At the time I had presented with one side of my face and tongue numb. After the MRI he asked a lot more questions. I also had intermitten fatigue & had been previously diagnosed with CFS from another doctor several years prior. And that's when he ordred all the other tests. After the MRI he was pretty certain it was MS but wanted to make sure & that he liked to have at least 3 tests that came back positive for MS. All of my tests came back positive except for the eye exam for optic nerve damage. He explained to me that there are several different diseases that mimic MS & he didn't want to misdiagnose.

nicolette527 profile image

I was diagnosed 21 years by the process of elimination with blood tests then having a brain MRI and never had a spinal tap. I refused. My mother had one in the 70's and the CSF never fully covered. x-rays always showed a dot from the missing fluid.

carolek572 profile image

I had a LP prior to my diagnosis, Royce. And the findings were inconclusive. So, like you, am not sure why it was needed. And the headache was out of the world! :-D

RoyceNewton profile image
RoyceNewton in reply to carolek572

ouch, MRI with valium much easier

carolek572 profile image
carolek572CommunityAmbassador in reply to RoyceNewton

I agree, except they give me a warm blanket, 80's music, and I am off to la-la-land :-D

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