Hi everyone, to all diagnosed with ms think a lumbar puncture is necessary for diagnosis?
Is it needed?: Hi everyone, to all... - My MSAA Community
Is it needed?
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anetap4545
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76 Replies
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Yes…it’s part of the process to diagnose. I don’t usually question my neurologist because he’s excellent.
Robbie
Well mine isn't. I'm on a 3rd opinion and last one recommended a lumbar amd other 2 said its msI don't know what to do
I had one and my results abnormal. I only can tell you that my neurologist thought it was necessary
You have ms was out painful, think I should do it?
Yes I do have ms. It was not painful at all. They gave me Valium . I would do it
2 neurologist said I have ms I thought I'll go see a third opinion she recommend a lumbar took that info back to original neuro and she said its ms no need for a lumbar I think do I do the lumbar for my peice of mind but what if it's negative. Scared to get it
I've had two LPs. The second one was easier because I'd had one before and it wasn't nearly as bad as I thought it would be. A tip is that after it's done, keep your back super straight for several days to avoid the terrible headaches that can happen.
You do get a numbing shot before they do anything so once they get down to it, you don’t feel anything.
Lumbar punctures are only used if there is still some doubt about what's wrong with you. From what I'm seeing of your other posts, you seem to have been diagnosed with MS already and undergoing or contemplating treatment for it.
Lumbar punctures are not without serious health risks and there is no earthly reason you should be getting one at this point unless they believe the MS diagnosis is wrong and are looking for something specific in your spinal fluid.
Why are you bouncing between 3 neurologists?
Guess my brain says what if they are wrong and the lumbar will be what I need
Is there a reason you're doubting the diagnosis? You have multiple lesions of varying ages, and I'm assuming you've had physical symptoms indicating MS.
Not really just pins amd needles in fingertips and dizzy
These days, due to improvements in other tests such as MRI, a lumbar puncture is mostly only done when other tests are inconclusive - e.g. if after evoked potentials, MRI, nerve conduction studies etc it is still not clear if someone has MS. As MS is a diagnosis of exclusion, other possible diseases or conditions need to be "ruled out" before MS can be considered,
If anyone on any social media or internet platform tells you that you have to have a lumbar puncture because it is a "definitive test" for MS then please scroll on by whatever that person has to say as they are wrong. There is no definitive test for MS (yet) and and a lumbar puncture is just one piece of the puzzle - it is also used as one of the diagnostic tests done for around 20 different conditions.
You always have an option to refuse any medical procedure but in relation to your comment about doing "the lumbar for my piece of mind but what if it's negative?" - worrying about whether it might be negative is a pointless exercise as around 10% to 15% of people who are confirmed to have MS and have had an LP will have had a negative result from it. So, if it you do have one and the result is negative it doesn't mean you don't have MS, it just means that your test was negative.
You've said in another post a while back that you developed several new lesions over a period of only a few months. You say you're seeing 3 different neurologists - and you've written in other posts that you have already been diagnosed with MS. You've also said that you've spoken to your state "branch" of MS Australia and they were supportive and have given you advice. You've been given advice abut medications by both the neuro and MS Australian and advised to start one of the more effective ones.
There is nothing wrong with seeking a second opinion but if you continue to chase around using up multiple neurologists' time fluffing around and not following the advice you've been given (by at least two of them) then you run the risk of ending up with even more lesions and potentially a serious (and quite possibly preventable) relapse which could result in significant and permanent disability. You also run the risk of neurologists not wanting you as a patient - and that scenario is genuinely scary.
I'm sorry that these are harsh words but it's time you bit the bullet and stopped messing around and started acting on the advice that you have been given by many sources.
I’ve never had a nerve conduction test or evoked potentials test done. But I was diagnosed 24 years ago. Methods change.
I had a nerve test done. One word...ouch!
Nope, I have never needed one.
I did one on top of three MRIs two on my brain one on my spine. They have to rule out Lyme disease
My neurologist felt it was necessary.
It was not painful and was done quickly in their office with my husband watching.
in my own experience it wasnt necessary just the MRIs of the head,neck and spine.
I think that an MRI is used for diagnosis today. I was diagnosed pre-MRIs and a spinal tap was used.
It's always been my understanding that a lumbar puncture is only needed if a doctor can't difinitively dx multiple sclerosis. I had so many lesions and symptoms that my doctor didn't feel the need for the LP. Good luck if you end up getting one 👍
Well, I had one. It was incredible painful, the dr missed and had to do it again, and the nurse sat me upright immediately causing n exploding headache. Not a fun experience.
It was negative to top everything off.
My first mri was inconclusive, too.
Lucky for me I saw an incredible neurologist who watched me for ten months and diagnosed me anyway and hit me on meds asap. It’s made all the difference!
Never repeated the spinal tap. Ten years later I finally did another mri and what do you know? I had a clear case of MS!
The procedure being discussed here is a lumbar puncture (LP) or a spinal tap. It should not be referred to as a "lumbar." That word refers to the region of the lower spine which contains 5 lumbar vertebrae. When an LP is done for MS diagnosis, the purpose is to obtain cerebrospinal fluid (CSF) for analysis, primarily for the presence of oligoclonal bands (OCBs).
Isn't that the name of the procedure to get the fluid? Not being sparky. I really want to know!
Yes, you are correct. The procedure is called a lumbar puncture or a spinal tap. I was disturbed by many people here calling it "lumbar," which sound moronic to me. Also this thread is full of misinformation. I will correct my entry as it is confusing. Thank you.
Would you do 1 or think it's needed for a 100% diagnosis?
There is not a simple yes or no to that question since a diagnosis depends on a number of variables. There is a clinical tool used by physicians to evaluate the variables; it is called the McDonald Criteria. The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates (Dissemination in time, or DIT) and to different parts (Dissemination in space, or DIS) of the central nervous system. This distinguishes MS from other neurological conditions. The McDonald criteria use MRI evidence extensively and suggest that an MRI scan be carried out on everyone in whom an MS diagnosis is being considered. The presence of oligoclonal bands in the spinal fluid is also a good marker for MS. It shows that there has been disease activity in the past, and so can be used as evidence of DIT.
I was told just from lesion growth that's it
The most recent version of the McDonald criteria mentioned by Betty'sMom is from 2017, and in that version the presence of oligoclonal bands in the cerebrospinal fluid (obtained via a lumbar puncture) is one of the "and/or" criteria for an MS diagnosis. Here's what the criteria state.
mstrust.org.uk/a-z/lumbar-p....
Yes. To get an accurate diagnosis, they need to know to what degree your neurones are being harmed, and the white blood cell count in your spinal fluid is around 7 times greater than that in people without MS.
I had one, but I think that was mainly due to me not having a brain full of lesions. I think it was also to confirm I did NOT have cancer on the brain, because I only had a small amount of lesions. I have got a video of both the results of my 1st MRI, where there's practically no lesions, and then one of an MRI I had a couple of years ago.
youtu.be/6UL8JYS8g1Y?si=Lch...
But neurologist told me ot can come out negative. I don't know what to do a 2 neurologist said I have ms from mri progression
That's pretty interesting 🤔 I honestly didn't know that it'd possibly come out as negative! But, if you have 2 different MRIs, in 2 different times, they're able to see that your brain has changed.
Greetings anetap4545. MS is similar to other immuno diseases. Cat scans rule out some but Parkinson's and MS has similar lesions. The placement of the lesions tell. Pre diagnosis I was urged to have a lumbar puncture. I chickened out. By the time I got brave enough, I had to have another cat scan and my lesions had multiplied. They were consistent with MS. I didn't have to get one however, the disease had progressed. Relapsing Remitting. The sooner you get diagnosed the sooner you can pick a therapy.
I have been by 2 neurologist just scared it's wrong and I need the lumbar. Think I'm losing my mind
I believe that you are confused about the types of scans. MRIs are used in the diagnosis of neurological diseases, not "cat" (CT) scans.
No I know what an am mri is
Please note that I was replying to Biggums, not to you!
My hunch is it's helpful but not completely necessary. I had one once and it was very painful. It took 2 hours because they couldn't get the needle in the right place. It seems to be random whether it's painful or not.
It all depends on who’s doing it. I had a neurologist try to give me one in the emergency room and I almost passed out because they couldn’t hit the right spot. I said, “no more!” They scheduled me for a procedure in the department where they do spinal taps regularly and it was not painful at all.
Hi, at the end of the day it's your decision and I would go with your gut, if you feel it would give you peace of mind then go for it. I can't see whether they have found lesions on your brain and whether or not you have had a VEP test and MRI. I have had 2 tests, lesions on the brain and a confirmed VEP test both suggesting I have MS. I was diagnosed during the beginning of covid March 2020 after getting Optic Neuritis. With hindsight I think I have had MS for some time and never realised blaming it on other things, but due to the covid issue the lumbar puncture was never booked.
When I could have a lumbar puncture I chose not to, you can still have MS and a lumbar puncture can come back negative, like yourself I was nervous about having it so did a bit of research and decided it wasn't for me. As the last few years have gone on I have relapses and know for certain MS is what I have. Thankfully I do have the support of my GP.
Good luck in whatever you decide x
It's one of the recommended criteria for a diagnosis of MS. Check with the MSSA and NMMS websites and see it listed there.
My neurologist did not definitively diagnose MS until positive results from a lumbar puncture, specifically positive Oligoclonal Bands test. My symptoms were the same before and after the lumbar puncture but diagnosed only after "O" band test.
From what I've read (I'm no Dr.) there are different approaches to diagnoses and not all rely on lumbar puncture.
I did not have one. My neurologist said he would do one if I wanted, but said I have classic MS based on symptoms and MRI. With everything I was going through, he didn’t think it was necessary to put me through another, possibly painful, procedure. I agreed and chose to not have it done. I’d say pick a neuro you trust, do your research about what they advise and make the best decision you can. MS is a difficult and unpredictable disease. Only you, with guidance from your dr, can decide what will be best.
Hard when I've seen 3 and ask rush me. But say I have ms and got 5 new lesions b in 2 months. Stay meds they say and move on
Hello Anetap4545, Initially when a Neurologist assesses your symptoms if mobility and pain are some of the symptoms you are experiencing; a lumbar puncture is usually required! I had one, when I was first diagnosed in 2008; clean negative. MRI of the Brain showed the MS little monster hiding out! I haven’t had another lumber ever again,
I’m older with MS now and. see our flares space out , everyone has their own journey pray you are connected to a good heath team!!!! You certainly are connected to a wonderful, caring family here who I love ❤️ dearly!!!! NeeC
OK I’m gonna approach this a little differently. It seems to me that you are scared & that you don’t want it to be true that you have a ms. It is a tough diagnosis to swallow. I had a conversation with my PCP who I have a good relationship with going back-and-forth, Dr: it might be ms me:but it might not be. dr: It’s likely it’s MS me:but it might not be dr: It probably is. I will order steroids & get you in to see a neurologist.
First meeting with neurologist, all she needed for diagnosis was seeing my brain MRI. She said you definitely have MS. You’ve had it for a while. I did not need any other tests and she said it was imperative that I start treatment right away. Well, in the time it took for me to decide between Tysabri or Ocrevus and get insurance approval and get my infusion appointment scheduled. I developed 2 possibly 3 new spinal lesions which significantly affected my walking.
So if you have 2 neurologists telling you, you have MS my advice to you is get on treatment ASAP because the next lesion could be the one that takes you out so to speak.
I would also suggest counseling to address the concerns you have and how to cope with those bc constant doubts & worry will drive you crazy!
Ask yourself if fear is what is driving your mistrust in your doctors or is there a basis in reality that they should be mistrusted?
MS has a lot of ups and downs and a lot of unanswered questions. It is best to make peace with that sooner than later.
Welcome support & education when it’s available.
Best wishes.
Take me out, how so?
a lesion could develop anywhere with resulting undesirable symptoms. This could be anything. Loss of eyesight, mobility issues, swallowing, speaking issues, bowel or bladder function etc
Everyone’s course is different and there is no way to predict what it will look like. Best thing a newly diagnosed person can do is start treatment. The goal is to prevent new lesions and keep the person stable (almost like frozen where they are ms wise)
Thats scqres me the most.I was diagnosed dec 2023 . From march to may 24 I got 5 new lesions. I'll start treatment Tuesday.
That is great that your treatment begins Tuesday. That should help give you peace of mind.
Wishing you the best 🧡
We’ve all been there so use us to ask questions, rant, whatever. No one truly gets it unless you have it!
Very true. I do t have many symptoms why I was questioning my diagnosis at all
absolutely get. The lumber puncture gave me the needed answer, yes I have MS. It was almost a relief to get an answer and start treatment. Worth It!
But so many ppl here say it can be negative and still have ms
I didn’t get a lumbar puncture. My diagnosis was based on an MRI. I did have to get one when I was on Tysabri and had an exacerbation. They were making sure that I didn’t have PML. Thankfully, I didn’t.
What treatment are you starting on Tuesday?
Kesimpta
I’m so glad you are starting on something. Sending you hugs and prayers 🤗🙏
I'm so scared but thankyou for your honesty.
Yes, and I would check with CURRENT UPDATE THAT NEOLOGIST FOLLOW! Perhaps some have a view but rule out with ALL TEST ! Yes, in had a spinal tap and much more. Not easy but stay AWARE AND get all reports of test and visits in writing and disk***. Keep asking and keep your ♥️ safe on your journey. 🕊️
But what if it's negative I will still ne ms. I don't know what to do when 2 drs have send it ms. I'm so conflicted
I just read Aaron Boster on u-tube. He is very good explaining. Try to get in touch for clarification. I still have fear when some symptoms can be something else. Lesions * are key in central nervous system. Brain and spine. Location is key. There is no cure but getting second opinion and current research is key * Getting it early is good but many do not. You need facts and faith that you will keep your plans and symptoms noted with UNDERSTANDING. We need to have our bodies treated with respect. Try to keep your spirit to learn . Fear of not knowing is harder. I learn each day but many say stop reading too much. Hope you feel better soon and and take one step at a time.
🙏
if u have to ask, you know the answer. no!!! it it is invasive. it may cause a flare up if u do have ms. ask your doc for " non invasive" diagnosis. if they do not offer alternative, go to another doc!!!
I have not heard of a lumbar puncture causing a relapse.
You're right - it won't cause a relapse.
everyone's body is different. any "trauma" , infection, procedure may cause a relapse. in my brother's cases, it does.
I am not dismissing your brother's experience. Can you say that your brother had a relapse after getting a lumbar puncture? Sure. We all have pretty good ideas of what might have caused a relapse or progression, and in many cases we're probably right. But since it's impossible to know for sure, we need to be careful about what we present as fact, particularly to those who are newly diagnosed.
yes, because it eliminates other diseases/possibilities
I didn't get it. My anxiety took over . I couldn't male a choice amd started treatment.
Being diagnosed with MS and starting new meds is very scary. You wouldn't be human if you didn't have some anxiety about this. We have all experienced it. However, it seems like the level of your (very understandable) anxiety was so high as to paralyze you and delay you from making necessary decisions about your treatment. I am not trying to be mean when I say that I hope you will take my earlier advice, and that of others, and talk to a therapist or counselor about your anxiety level. MS is a lifelong challenge, and you will be doing yourself a great favor by getting the help you need now, rather than attempting to deal with it on your own. I wish you the best, and I hope you do great on Kesimpta!
That's not correct - it does not necessarily "eliminate other diseases/possibilities" - it's actually used as a test to assist with including other diseases. Here's a list for you.
"Apart from MS, there is a long list of diagnoses with CSF OCBs reported: systemic lupus erythematosus, neurosyphilis, neurological paraneoplastic disorders, Behcet's disease neuroborreliosis, aseptic meningitis, neurosarcoidosis, HIV infection, cerebral tumors including lymphomas, Sjögren's syndrome, herpes encephalitis, Morvan syndrome, Anti-NMDA and other autoimmune encephalitis, neurotuberculosis, anticardiolipin syndrome, HTLV myelopathy, prion disease, schistosomiasis, stiff-person syndrome, cerebral cysticercosis, GBS, CNS vasculitis"
OK, I just meant it was helpful in diagnosing, I know before I was diagnosed some diseases/illnesses were eliminated from a list of possibilities that were considered possibilities because of my symptoms
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