Last reply 1 month ago
Lumbar Puncture Results Anxiety

I just scheduled my lumbar puncture, I’m not really worried about the procedure, but more about the results. I don’t like that I need someone to pick me up, it makes me feel so dependent and like I can’t just take care of myself, but otherwise I’m not worried about the procedure.

What has me freaking out is the results, MS or more “We don’t know” and both outcomes seem really bad to me. This is the last test that I’ll be getting, and I honestly just don’t know how much more not knowing I can take. Most of the things I’ve found about the lumbar puncture seem to be about the fear of the needle or the after-effects, but just hoping I’m not alone in the worrying about the results.

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vixen
2 months ago

Hello @deftriver. You are exactly where I am two years ago, this very week. If you do have MS, that would be confirmed by the lumbar puncture. Along with the other tests including MRIs that you’ve probably had. Most people here will tell you that limboland is absolutely the worst. It’s a horrible stage, especially at this time of year too. Your profile doesn’t say how long you’ve been in the spotlight, or what your symptoms have been. Whether or not you have MS, I hope you find support with this site. We have all been through the symptoms, the testing, the waiting so do keep asking questions.

Regarding the LP, it will be fine but you really do need to take care of yourself after, even if you feel fine. If you don’t rest and lay flat afterwards for a good few days, you can get a monster headache. I went straight back to work the day after because I felt fine, but that was a huge mistake. If you use the search box here there are lots of tips and advice from people who have experience.

Please also cast aside your fears of feeling dependent. You are going through awful turmoil at the moment and need support. You don’t need to prove anything, you need to take care of yourself whilst you get through this time. It will all pass, whatever the result. At the moment, life is about taking one day at a time, you can’t do any more than that. But, rest lots, eat well, treat yourself lots, just until this period of time is over. Lots of love x


stumbler
2 months ago

Hi @deftriver and welcome.

Good advice from @vixen above. All I can really add is that whatever your lumber puncture shows, it won’t change anything. However, a definitive diagnosis will allow you to draw a line in the sand and allow you to move on.


imagwms
2 months ago

@deftriver keep loved ones by your side at this time, for me after my puncture procedure and it was certain i had ms was a weight off my shoulders mainly because i finally knew exactly what was wrong and wasn’t lift wondering but it was still a hard pill to swallow and here i am a yr later stronger than ever ♥️ i wish all the best of luck love.


niteowl
2 months ago

@deftriver I am in exactly the same situation I am waiting for a date for lumbar puncture, neuro said it would be before Christmas.
I have so many symptoms been in limbo land for so long it’s the not knowing and having no answers.
It’s really getting to me at the moment as I am struggling day to day especially with my work, just gone back after being signed off with optic neuritis. Got a weakness in my right leg it drags and constant nerve pain in my legs and hips which feel like they are on fire at nite plus the fatigue which knocks me for six, wonky balance and tripping over nothing ……

I really understand what your going through xx


deftriver
2 months ago

So this all started just over four years ago, towards the end of 2014, I started getting numbness and tingling, a strange shooting pain, strange sensations, and major brain fog. It got a lot worse in March 2015, I woke up at 5:00 AM one day when it felt like someone had put a corset on me and was trying to tighten it incessantly, after that I started having vision problems, word finding difficulties, it would feel like bugs were crawling around on or just under my skin, all in addition to everything that had already been going on. I went to so many neuros and nothing, most just dismissed me, that winter everything got somewhat better, and in 2016 it seemed like most of the issues were gone. Then for two years I just had the occasional symptom, corset feeling, pins and needles, and things like that, luckily the brain fog and cognitive stuff seemed to go away. Well in September of this year (2018) things came back with a vengeance, one night as I was standing I suddenly had pins and needles in my left foot, within five minutes I could no longer support myself on it, by the end of the night the left foot was numb and pins and needles in the rest of the leg and all of my right foot and leg. Other symptoms started as well, I had to use a cane for about a month because I just could not walk otherwise because of the nerve pain in my right leg. But I finally found a good neuro who is actually looking for answers even if she’s not optimistic they can be found. She started asking me why the old neuros didn’t consider it, and I really wish I had an answer, but she was the first medical professional to even bring up MS with me, the only other people talking about it were my friends when I’d tell them what was going on. She sent me to an infectious disease specialist to check on things and even he broached the topic. My brain has lesions that are consistent with MS, but because of lab issues my doctor is still trying to see them for herself to see if things are different between the old MRIs and the new ones.

Now that my doctor has broached the topic of MS I have friends who are like “Oh, no!” but I tell them it doesn’t change anything, I’ve been dealing with this for four years and all that means is an diagnosis, I’ve been living with what I’m living with, it doesn’t change that. What could change with a diagnosis is treatment, when you don’t know they throw something at you in the hopes that you’ll feel better, all trial and error, but with a diagnosis there’s something they know, and that can guide them.


deftriver
1 month ago

Well, it’s the worst results possible “normal”. Despite elevated IgG, RBC, albumin, and some other oddities, my doctor says it’s nothing, and that I have to go on living in pain, and waiting for it to get bad again, waiting for another MRI in a year.


stumbler
1 month ago

@deftriver , I’m sorry that the Lumber Puncture results have failed to allow a diagnosis to be provided to you.

A diagnosis has to satisfy the McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria). Now, given the details that you have provided above, you may have grounds to ask for a review………


deftriver
1 month ago

@stumbler, I get what the criteria are, and that there’s no definitive test, but having “normal” (I put it in quotes because it wasn’t all normal) doesn’t help, it’s the worst case scenario (best is a diagnosis of a disease with treatment and cure), I’ve been dealing with this with no end in sight. Now I just have to keep on floating in nowhereland with no rope and nothing to help.

I also find it very frustrating that no doctor seems to care about the lesions on my brain, I don’t like it and want to know why they’re there, and in a pattern typical for MS.


stumbler
1 month ago

@deftriver , you have to keep asking the questions until you receive an answer.

We have to be assertive, but polite, to be our own advocates……


deftriver
1 month ago

This was my 10th neurologist, now I’m wondering about going to another type of doctor who might be able to find things that neuros just don’t look for.


stumbler
1 month ago

@deftriver , you may want to have a word with the local chapter of the MS Society and see if they can recommend the nearest MS Specialist.

Not necessarily to get a diagnosis of MS, but to rule it out or in.


deftriver
1 month ago

Thank you @stumbler


cosine
1 month ago

@deftriver

Im so sorry about your unexpected results. I know exactly how you feel in wanting a diagnosis. If it is MS it will declare itself soon enough but either way, What pain meds are you on? I’ve taken so many the past couple of months. Right now try to focus on making yourself as comfortable as you can while you wait. Im waiting to see a neuro for the 3rd time ,the second time was 2 years ago and first time was 3 years ago. But my symptoms did get better in between. Ive had to use a cane for the first 2 times too. But about the drugs,Gabapentin helped me walk. And breath.And the Gaba really helps with my spasms aswell. And ive tried naproxen and codiene and ibuprofen and paracetamol. When one doesn’t work the other does. See which one works.

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