clear mri unclear lumbar more tests anyone been there?

[tjammies]

Hi all,
Had my 2nd appointment with the neurologist   today he said my head mri was clear, he did the physical exam    for reflexes etc and said reflexes still brisk and shaky legs and twitchy muscles meant he wouldnt be able to say for sure one way or the other about ms without another mri this time of the spine, neck area, and another lumbar puncture. Te first had bands in both serum and blood. I hoped today to find a for sure answer either way but do know from reading others posts and the health pages that this is not straightforward. I hated the mri and lumbar puncture left me with a ten day awful headache. Im very mixed up about all this. Just wondered really if anyone had been in a similar situation. I suppose if he thinks its worth doing the extra tests i should do it and the hopefully be able to rule out ms. Otherwise i guess i will be left wondering. Any thoughts anyone ?
Jean

[tjammies]

thanks for all your replys and good wishes. I trust my neuro, think hes one of the good guys, i think yesterday dissapointment at not knowing either way was my main feeling, followed by being upset about more tests having thought they were done. Yes the mri makes sense, it wasnt so bad, i was just glad when it was over and thought that was that! iI think my neuro is very unsure, he says my symptoms/history fit with functional/conversion symptoms, they didnt have any definite starting and stopping and i have had them for 3 months, they started with paralysis and were mistaken for a stroke. I think the sudden way they started and what they were like made him think not ms related. My physical exam last time and some newer symptoms this time from   with shakiness in my legs which he could make happen by moving my legs a certain way , have made him still suspect inflammation.   And some cognitive problems makes him think brain stuff. I think he wants as much info as possible because he cant say one way or the other. The idea is to go to the hospital as an outpatient for a day and get it all done at the same time, hence my panic i think. I'll think on the lp, it'll be a couple of months till my appointment and i can refuse it if i want. thanks for taking the time to give your experiences and thoughts,
jean

[pennst8r]

Believe it or not, you are lucky in a way (gotts find the good in this somewhere, eh?). I've been trying to get a repeat MRI for 2 years and neuro doesn't seem to feel it necessary. This is just my opinion, but I think whatever it takes to find an answer is worth the effort.

Good luck!

Penn

[Amyloo]

No one will ever mess with my spine (LP) again, unless I'm dyin'.  Mine was neg and I was still dx MS.  Get a look at your t-spine with MRI.  God bless you, Amy

[cz1970]

Hi there,

Yes I've been in your boat. My 3 MRI's were all neg. 2 head, 1 neck. My 1 LP showed "1 or more" O bands etc but not enough to dx MS. Anyway I was dx based on physical symptoms and neuro checks etc plus I had 3 very obvious flares in a 11 mo period of time.  I would NEVER NEVER EVER...... oh ya NEVER have a LP again! I got the spinal headache and had toget the blood patch in the ER too. It was aweful. Anyway, now I'm on Copaxone. All is ok.. not great but much better.  Good luck!

cz

[essdipity]

Hello and welcome. I'm glad your neuro is being thorough. However, he is certainly being very wimpy too. The official criteria for diagnosing MS (McDonald Criteria, see our Health Pages), do NOT require you to have another lumbar puncture for MS to be diagnosed. In fact, even your first LP wasn't a requirement, but now that you've had it, you know that the results were iffy. O bands in both places doesn't give enough info.

In your shoes I would resist another LP, since it's an invasive procedure that can have very unpleasant side effects, as you know. But absolutely do have the neck and spine MRI. It will not hurt you and could provide very helpful, maybe conclusive, info about your central nervous system. If that is clear, then maybe in the future another LP would be in order, but not soon. You have abnormalities upon physical testing that should be leading your neuro to some conclusions without that.

Make sure all MRIs are done using the MS protocol, and find out what strength the MRI machine has. Please keep us posted,

ess

[Wobbly]

it's not easy going for results and hearing you need more testing...alot of us here do that quite often.  So we understand how you feel...

getting another LP...oh, well.. I would get the MRI of the spine first and get those results..maybe that would answer the questions first..then if needed...get another LP..

is that what the Dr said?  Hopefully...

did you get a copy of your MRI and report from the radiologist?  I always ask for a copy of the CD and report... if you can do that..OK..

keep track of your symptoms and record them when they start and stop etc.. any new ones.  
I'm not yet Dx...been doing this for three years and have learned when I get a test done..I ask for copies at the same time..it saves time to sign the paperwork then...and get the copies..either mailed or pick up..

welcome to limboland...your not alone here and you know if your body is telling you something isn't right...
let us know what you decided...and if you can get the results of the report..OK

take care
wobbly
undx