what would you do?

[illinwithoutacause]

hello there,

i am a member of neuro limboland and wanted to pick some of your brains here in the MS forum.

i had an appointment with my rheumatologist yesterday morning and she said she was starting to feel concerned about the length of time i have been dealing with my neurological symptoms.  she asked me what the conclusion was during my last neurologist appointment and i told her there really wasn't one.  my brain & spine MRIs are allegedly normal, my VEP and multi-focal EP tests were negative, as was the OCT (computer tomography to check my retinas & optic nerves).

she told me she wants me to have another lumbar puncture to screen for MS.  i had one done last december to test for generalized inflammation, but the neuro didn't run an MS panel on my CSF because he didn't feel it was warranted since my MRIs had been normal to date (yes, i am kicking myself in the you-know-what for not pressing the issue).  i have possible sjögren's syndrome based on a positive lip biopsy, but i don't have the tell-tale dry eye, mouth, or blood test resutls, so i don't have a dx for that either.

i am having some pain and flickering peripheral vision in my left eye; burning in both eyes; buzzing in my feet; pain and buzzing in my left side; brain fog; and back pain.

i don't know what to do.  my husband and i have been talking about it and we just don't know what would change if i had the lumbar puncture and it revealed o-bands.  in the absence of any other positive test results, would i even get a diagnosis from that?

it is my thinking to wait and see if something eventually shows up on MRI before having another LP.  is this foolish?

what would you do in my position?

thank you in advance.
best wishes,
binx

[steph74]

Personally, I'd stay away from a second LP, but I had a bad experience with the first one.  I've also had 8 years of sx with clear MRIs, so I know this can go on for a long time...  

However, some people have received a dx from LP results, w/o MRIs being positive.  However, others have not.  It depends on the neuro.  I'd ask them flat out.  If they say it will get you a dx, that would lean more in favor of doing it.

I've heard that burning eyes could actually be a sign of dry eyes.  Wish I had some concrete answers for you.

Stephanie

[jensequitur]

Sometimes the LP is negative, but you're still stuck with the symptoms.  It's too bad they don't have any left over from last year.

I would say it's up to you.  Be prepared to get no results from the LP, but if you do, then it's an aid to diagnosis.

What strength machine were your MRIs done on?

[illinwithoutacause]

thank you, steph & jen, for your replies.

my first LP certainly wasn't fun, and i did have a wicked headache for a few days afterwards.  it got so bad that i was pretty concerned that i was going to have to have a blood patch, but then things mellowed out, thank heavens.  i just really don't like the idea of undergoing that procedure again at this point if it really won't be terribly conclusive for me in the absence of other diagnostic criteria.

it really is a shame there wasn't any extra fluid left over from the december tap.  i decided that debaucle was enough for me to leave my neuro and i have an appointment with a new person next month.  i'm going to talk to her about all of this, but just thought i would educate myself through your experiences on this board first.

this is my most recent MRI history:
i had a normal brain MRI w/ & w/o contrast on a 3T machine in february and a subsequent 1.5T c- & t-spine MRI w/ & w/o contrast in april.  these scans were done using MS protocol and came on the heels of a 1.5T MRI of my c-spine that i had done in january 2010 to check the status of my cervical spine degeneration and stenosis.  the january scan revealed a linear hyperintensity on the anterior cord from c3-c7 (the exact location of my disc degeneration).  the radiologist said it was possible myelitis and my neuro sent me for a 3-day solumedrol infusion which made me more ill than i have ever been in my life.  

the april c- & t-spine MRIs were compared to the january 2010 c-spine scan and reviewed by a neuro-radiologist at our local research university where i sought a second opinion.  the neuro-radiologist concluded that the hyperintensity was not indicative of myelitis, but a "normal" variation in my spinal column.

i was supposed to have the other cervical and thoracic MRIs done on a 3T machine, but the MRI tech wouldn't do it because i had a copper IUD.  i was in my gown, with a valium in my system and my child was with a hard-to-come-by sitter when they told me about the issue with the IUD, and they gave me the chance to reschedule.  the tech then assured me that their 1.5T scanner was a super high quality machine and produced images that were on par with 3T machines from other institutions.   i relented and settled for the 1.5T scan.

soooo, after 19 months of bizarre symptoms, feeling like i've been poisoned, and having no answers, here i am.  i just don't know what to do anymore, but i don't want to make decisions that i will later regret (like not having the MS panel done in december.)

thanks for "listening" and for sharing your wisdom with me.

blessings to you all,
binx  

[RedFlame]

If your LP comes back as normal, I think you should take a break for a while.  As long as you are receiving pain medicine to help keep as comfortable as you can take a break.  

I have been in limbo-land too and it's tough.  

Your illness will still be here when you return from taking a break.  You will eventually have answers, you just don't have them now.  Take a breath and remember that we are here and that we consider you to be a member of our community.

Red

[illinwithoutacause]

thank you, red.  i hope you are doing okay--i've been keeping up with your posts and sending many thoughts and prayers your way.

i certainly appreciate your input and inclusion in this community.  i swear, i don't know what i would have done had i not stumbled upon medhelp last year.

i think i'm going to take a break for a while and see what happens.  i am certain that i will eventually require an LP, but i think i'll put it off for a while.  my symptoms seem to be different nearly every day, so for now, i'll just try to ride the waves as best and as long as i can.  the support i get from medhelp will carry me a long way.

blessings to you all,
binx