Newly diagnosed, a few ?'s about lp's, and ms diagnosis

[Bloodhound]

I was diagnosed in May 2014, I've read some posts from all of u that helped. I still have lots of questions. A couple are, how many spinal taps should I expect to have done? I had one when I was waiting to be diagnosed, wasn't sure if it's something they have to check often. My next question is something I'm confused about. I'll ask my neuro on my next appt also, but to my knowledge she didn't do any tests to rule out other conditions that mimic ms. My spinal tap report said only one gamma restriction band present which is seen with B-)cell tumors of the brain and some other scary diseases! My MRI showed 3 punctuated foci of white matter in bilateral frontal lobes. She showed me the MRI pics and they we're small. Just wondering if I should be asking more questions about this or just trust her diagnosis of rrms? Tanks in advance! Sorry so long, my first time posting lol.

[ejonesbowlie]

Spinal Tap

Hey there! Sorry to hear of your diagnosis but glad you found this board as there is a lot of good info to be found

I will only comment on the lumbar puncture as I am pretty certain that once you have one that is positive for MS you should not need to have another in regards to MS as it should not change. Thank goodness as they are one of the most unpleasant procedures a person will ever have to undergo!

As far as the questions on your MRI, I feel that if you have any doubts on the interpretation you should for sure question your neurologist. If you don't feel comfortable with their interpretation then I would get a second opinion...preferably from an MS specialist. Ruling out any "mimics" is huge and if that has not been done, I would think this is something that is very concerning.

I hope this helps. MS is a life altering diagnosis and something you want to be sure is correct. You are smart to ask questions and be certain you have the right diagnosis.

Take Care and keep us posted.

Beth

[hunterd]

I was diagnosed in May 2014, I've read some posts from all of u that helped. I still have lots of questions. A couple are, how many spinal taps should I expect to have done? I had one when I was waiting to be diagnosed, wasn't sure if it's something they have to check often. My next question is something I'm confused about. I'll ask my neuro on my next appt also, but to my knowledge she didn't do any tests to rule out other conditions that mimic ms. My spinal tap report said only one gamma restriction band present which is seen with B-)cell tumors of the brain and some other scary diseases! My MRI showed 3 punctuated foci of white matter in bilateral frontal lobes. She showed me the MRI pics and they we're small. Just wondering if I should be asking more questions about this or just trust her diagnosis of rrms? Tanks in advance! Sorry so long, my first time posting lol.

WELCOME TO MSWORLD! I only had one spinal tap, I am not a doctor, but I think they are fairly accurate. i do not think it is a common practice to have more than 1 spinal tap.ask about the other tests that did or didn`t get performed. ask your dr as many questions as you have, you are paying the bill, not them. write your questions and concerns down so you remember everything. good luck to you!

[Bloodhound]

Thanks!!

Thank y'all so much! I was really hoping that spinal tap was a one and done thing lol...not fun at all!
I usually write down my symptoms and questions for my Dr, but I've forgotten them a couple times.
I got diagnosed within a couple months of my pcp suggesting ms.
My MRI just had 3 small lesions, but I've had quite a few problems since diagnosed.
Just gotta remember that notebook lol
Btw, I've learned a lot from reading posts on this site, more than any other!

[MSW1963]

Bloodhound, I was dx with MS with too many to count brain lesions and a negative LP. I had all the rule out medical test, and mimic rule out along with many brain lesions on MRI resulted in my MS dx.

My negative LP hasn't been performed again. None of my MS neuros ever wanted to perform another LP. LPs are not always the most reliable test, lots of things can go wrong in the medical 'system' when handeling spinal fluid, plus a few other issues with LPs that I can't recall.

I've read that a positive LP can depend on when the test was performed, for instance if there is active inflamation and symptomatic/sp? at the time. I imagine LPs for those with early PPMS will usually result in a positive LP.

LPs do come with some risk/high risk, so if a dx is based on ruling out 'mimics', with MS lesions typical for MS on MRIs, and meet the McDonald criteria, it's may be time to soothe your doubts about your MS dx. But after 15yrs with MS, I continue to doubt my own MS dx.

Talk to your MS Specialist about the possibility of MS mimic, and ask if your dx is based on ruling those out.

Best of luck and keep us updated on your progress.

[JerryD]

Several MS specialists that I have heard speak about making a diagnosis said that doing an LP is not always necessary since the MRI became very common. I am not a doctor and the best way of getting an MS diagnosis is to do all of the tests. Get several 'second' opinions, preferably from an MS specialist . Good luck

[bethr]

I was diagnosed last August, 2014....

None of the 3 doctors whom I've seen, requested a spinal tap. They diagnosed me based on my symptoms, plus brain and spinal lesions. Whew..... I was very scared by the thought of a spinal tap.....








QUOTE=Bloodhound;1470552]I was diagnosed in May 2014, I've read some posts from all of u that helped. I still have lots of questions. A couple are, how many spinal taps should I expect to have done? I had one when I was waiting to be diagnosed, wasn't sure if it's something they have to check often. My next question is something I'm confused about. I'll ask my neuro on my next appt also, but to my knowledge she didn't do any tests to rule out other conditions that mimic ms. My spinal tap report said only one gamma restriction band present which is seen with B-)cell tumors of the brain and some other scary diseases! My MRI showed 3 punctuated foci of white matter in bilateral frontal lobes. She showed me the MRI pics and they we're small. Just wondering if I should be asking more questions about this or just trust her diagnosis of rrms? Tanks in advance! Sorry so long, my first time posting lol.[/QUOTE]

[22cyclist]

Bloodhound: I did not have an LP when I was first diagnosed, I was diagnosed by MRI. I had both brain and spinal lesions. Even if you have 3 that is enough to diagnose you. Two is the cutoff for the McDonald criteria if they are in the right place and the right shape. You don't need an LP for evidence. This must be your real diagnosis. Eventually we all gain lesions in our CSF, it just takes a while for some.

Take heart, at least they are going to start you on a medication for MS. It should keep the lesions at bay for a little while anyway depending on what you are started on.

Take care, and keep us posted on how you are feeling.

Take care,
Lisa