Hi I’ve more or less decided to have an LP and wondered if the LP test come back negative for MS would I still be offered DMT’s? I have enough lesions to fit the criteria. thans
The concern I have is I twitch quite alot (not spasm), which is porssibly muscle damage - seeing my neuro in 4 weeks. I twitch quite alot at the base of my spine so it would be awful to twitch in my back with the needle going in me as I would need to keep still.
Have you been diagnosed with MS? If so I wouldnt bother to be honest, its such an invasive procedure and results can muddy the water.
IF you have no diagnosis then thats different and its worth having it done.
A lot of people get diagnosed without the LP anyway. Dissemination in time etc, RRMS. Its a mine field diagnosing MS.
I don’t know what would happen if it came back negative. I didn’t have an lp, I was offered one pre diagnosis but my consultant did caution that I might not get a positive result for anything. I think a negative would muddy the waters tbh, in a way you might be better off with no lp than with a negative result. That was what I think my consultant was hinting at. Cheryl:-)
Thanks. I have been diagnosed with MS. My first relapse was huge 4 months long. It was a multisymptomatic attack involving brain, and spine. My symptoms were: dizziness, double vision, night time anxiety attacks, then when i took steroids I got loss of strength in arms (poss due to neck lesions), swollen purple feet, numbness between legs for a few moments, 2 days of bladder issues, aches and pains and 8 ws of constipation.
If I have another similar size relapse and symptoms I think it might finish me off. I’ve written to my neuro to ask him if the steriods caused some of these symptoms. My first MRI was during the double vision and and at that point just showed lesions on brain and neck. The second MRI 9 months later showed even more lesions in neck and thoracic spine. So was diagnosd with MS. I have had only one atttack though but the neuro said if I have an LP he would investigate other avenues. I’m about 90% better and its been nearly 12 months since the start of the relapse. Have seen 4 different neuros now. The diagnosis have been:1) possible RRMS. 2) clincally isolated demyelinating syndrome 3) RRMS.
Hello Helebon
You’ve been diagnosed and you’ve clearly been having symptoms, why does your neuro want you to have a Lumbar puncture? What other avenues would he investigate?
I can’t see the point of putting you through the procedure.
Take care x
Completely agree with the above posts questioning why you need to one. I was diagnosed without, as well. Nobody has subsequently claimed it was insufficient - not even the insurance Co, who I’d thought might have a moan.
I think, in your place, I’d be asking the question every patient has the right to know: “What is the benefit to me of this procedure?”
If they can’t explain in clear terms what the benefit would be, I’d be saying no. It shouldn’t be something they just like to do, for the sake of it.
Tina
Hi there I had the LP on the 19th of December I wouldn’t go through it again. I have been told I have ms and due to start meds in January. I asked my neurologist why I need it if he is so sure. He said it was to dot the I’s and cross the t’s. I think it will come back clear as everything else has so far. Im hoping he will change his diagnosis if it does
I’ve got my next neuro appt on the 29th Jan. My GP said she was a bit confused by my symptoms and hence has asked for a second opinion (not the neuro appt on the 29th). The GP said she wanted to check my bodywide twitching and loss of strength in both arms was right for MS diagnosis. Logically I think the severe relapse has caused me quite a lot of damage and that why I have twitching (not spasms) everyday. The loss of strength in both arms I think may be caused by all my lesions in my neck and back. I do feel in a different place mentally compared when I had my relapse, I was very anxious and stressed at the time. I would be interested to have another MRI to see what my lesions are doing but I know its all expense for hospitals so that won’t be on offer. Thats the other thing though if the LP came back clear then what would he test for? I’ve had bloodwork - that came back normal. I would like to have nerve testing though.
I suggets your GP should be speaking to your neurologist for an explanation if she doesn’t have enough knowledge of ms.
All the symtoms you mention seem ms related to me.
I have my diagnosis…primary progresive and to be honest I’m really not bothered about having anymore scans.
All the best to you on your journey.
Take care
OK I am going to play devils advocate here. Have you considered you could be deficient in Magnesium and Potassium?
Both of these well especially the first one causes muscle twitching and weakness.
A lot of people with chronic illness like MS can have defiency in these areas I did. I used to get muscle twitches just a bit, and I took some extra magnesium and they went. Now I dont say that is what is wrong with you but sometimes it is our diet that can cause these things.
Your body is so busy coping with the MS it forgets to top you up with stuff you need.
Just a thought. You could try a supplement for 4 weeks and see if it helps.
I eat a banana a day for my pottasium.
Also Fibromyalgia can cause really bad muscle twitching. A lot of people with MS can have Fibro too. Just a thought.
Anyway hun if I had a diagnosis of MS I would not go for a LP.
The only other thing your GP should do is send you to a rheumatologist to eliminate other mimics of MS, not insist on LP.
Its so invasive.
These are only my opinions I am not a medical expert, just looking at things out of the box, but i would try the supplements first IMHO. Make sure you ask first and dont take more then recommended dose of any SUPPLEMENTs.
ThanksGuys. Ok So I have written to the neurologist to ask him if this sequence of events suggests a different diagnosis of MS (and possibly a bad reaction to 5 days of oral steroids).
1st Jan onwards dizziness (visited GP 2 times for 2 x epley in this period),. Left ear pulsating, ear fullnes and pressure (may be related to the dizziness or anxiety?) 19th Jan double vision started in left eye, GP saw me and diagnosed me with BPPV. then double vision went to went to right eye too. 1st Feb GP referred me as ‘choose and book 6 weeks’. severe anxiety and night time anxiety attacks onwards. 13th Feb saw neuro double vision still constant in both eyes and inward gaze to left eye - VI nerve palsy. 16th Feb MRI showing lesions on brain. 18th Feb results by phone. 19th got prescription note and picked up steroids from chemist. 20th Feb able to start oral steroids.
From the day I arrived back on the 19th Feb 2013 to recover at my parents home and begin steroids I experienced the following symptoms:
Extensive twitching of feet at night, some in arms. A little during the day. (started night of 19th or 20th Feb)
Severe brief pains in feet and ankles (19th or 20th Feb).
Both feet swollen with fluid and reduced to purple feet/toes. Right foot healed rapidly in around two weeks, left foot/toes still purple (19th or 20th Feb).
Loss of strength in both arms, I am right handed – trouble lifting a dinner plate with food on due to the weight (noticed first 20th Feb, recovered quite a bit of strength by August). Could this be caused by my neck and spine lesions?
Sore neck in bed and very tense shoulders.
Unable to sit in dining room chairs/computer chair as caused sore neck and left shoulder (First noticed 19th Feb). A neuro mentioned this might be caused by something in my lower spine (a lesion i’m assuming).
Hair thinned, acne on my chest, back and neck.
A few or more nights of eye pain around 20th Feb, steroids taking effect I guess.
Two days into steroids went numb between legs for a few minutes, I rubbed area and sensation came back, then two days of bladder problems followed which resolved. (22nd Feb) Heightened sensitivity – felt like I was sleeping on a very hard surface for a night (March).
Stinging and prickling back when sitting back in chairs sometimes (March onwards).
Developed tender patch on top of head at start of steroids, in same place as banged head in August 2012. Unable to wash this part of head in shower and had to gently use water from a cup. Patch resolved by early Sept 2013.
A night of feeling short of breath.
Many many weeks (8 or more) of severe very painful constipation (causing me to cry), caused bleeding/haemorrhoids/fissures. I cut out wheat, gluten and milk. Then constipation started resolving early May. It probably was a coincidence but that is why I mentioned celiac to you.
An evening of very painful aching back legs (June).
Sore lower back and coccyx area (due to the constipation?) (June - Sept). Coccyx area sore when lying down during follow up Sept MRI scan.
Lots of aches and pains after this and left foot still purple. thanks xx