So confused

[kimmyarra]

Is it best to have a spinal tap to confirm ms?  I'm so confused.  I read that if you have a negative spinal you still could have ms.  Do most people that have ms have a positive spinal?  Anyone know what the percentage is?  I don't want to go through the spinal if I don't have to, but I really would like to know if I have ms, or not.  
My blood work came back as low b12, and abnormal thyroid.  My mri had several hyper intense lesions.
Can low b12, or an abnormal thyroid cause this on an mri?
I would appreciate any advice.
Thanks,
Kim

[HVAC]

The Spinal is a gamble. For me it was the sure proof of MS since my o-bands were so high. If it had been negative I would have had to wait another six months for yet another MRI. I had been doing that for two years. For others it is negative. Some think it is not necessary for an MS diagnosis. For me it was necessary. I am glad I had it. I am also glad I never have to have another one.

Good luck,
Alex

[kimmyarra]

Thanks Alex
I dread getting one, but I really want to find out what is going on.  I have another question.....If I do get a ms dx....Do the doctors start you on the medication right away? Or do they wait until you have symptoms, or lesions?  Do you know if the medication works to slow down progress?  Just wondering....I hate the thought of injections, but I'm sure I can do it.
Thanks
Kim

[doublevision1]

I think the LP is a good idea.  Mine showed no O-bands but was high in white blood cells and a few other things I don't remember.  I was told it was on the 'high end of normal' and as I met the MacDonald criteria on a few other points, RRMS was confirmed.

I think eventually, *most* patients with MS will show O-bands.  My RRMS diagnosis was questioned earlier this year after a bout of Optic Neuritis.  Given that, and the presentation of my MRI, mostly spinal lesions, minimal brain involvement, and my attacks being primarly optic and spinal (except for the double vision), my neuro speculated I may actually have Neuromyelitis Optica (Devic's disease), formerly considered a form of MS, now, a distinct demyelinating disease itself.

Anyway, I mention all of this because the spinal tap is often used to distiguish between these diseases, when the blood test for NMO is neg, or even positive as there is a high rate of false positives for this test.  In MS, O-bands are common; in NMO, they are rare.

My neuro is still treating me as RRMS, but NMO is not off the table, and if I have another attack which is clinically more like NMO than MS, he advised he may re-do the spinal tap and see if it is has changed.  The implications are major, as the treatments for one disease do not work for the other other.  The prognosis for NMO is much worse, and I never thought I'd be happy to *only* have MS until I learned how much worse the alternative might be.

If it helps to reassure you at all, my spinal tap was done by a resident and I had no problems.  The most noticeable part was the needle to numb the area, and that wasn't awful.  Didn't feel the other needle at all, and since you don't see what's going on (if they would have offered a mirror I would've declined), it's not a terrible experience for most, I think, based on comments made here.  It was over and done with very fast.  I remained lying down for several hours afterwards, while they were waiting to find me a bed at the hospital (they wanted to admit me).  Therefore I had none of the bad headache you hear about from those who got up too soon afterwards.  I just laid down and drank diet coke and coffee and was fine.

I saw your follow up questions to Alex and I'll try to get on later and share with you my experience, post-diagnosis, meds, etc.

[green924]

Just had 1 done about 3 weeks ago, I think, ever thing has started to run together... It wasn't as horrible as I had worked myself up for, but can't lie and say it didn't hurt like h**l! I think I stayed flat for a lot longer than what they suggest due to the pain, but I always have a spinal fusion just below where they stuck me (Ouch!)
Anyways, after 10 years of incorrect dx's the LP did definately "help" decide for my neuro to give me a definate dx of MS, along with tons of other tests he had ordered. I don't know all the specifics like some, but they called a week after tests to get me into office to discuss med. They put me on Copaxone, but it is VERY expensive and I'm un-insured due to other pre-existing conditions (long stories) but I am in the process of filling out forms to get some assistance before starting the DMD's.

Hope this helps you some, but I'm still pretty lost myself and get lost easy...
Try to have a goodnite everyone!
Live, Laugh, Love
Melanie

[green924]

Meant to say I "ALSO" had a spinal fusion in my lower back.
I really need to try to read what I write before I post... If I ever make no sense maybe somebody'll let me know! Or I can just confuse everbody as much as ME! LOL

Now really (maybe) goodnight!

GOOD LUCK in whatever you decide to do! My new neuro (that I don't totally like) explained it to me as I just had to bite the bullet and have the tests done be able to find anything out. Crazy thing is at first I thought he seemed to not think I had anything, and his soon to be retired partner saw me in 2002 when I had my 1st abnormal MRI and he dismissed the possibility? totaly & ordered no additional testing... Guess taht shows what he knew. Sorry to add so much. Hope to hear everthing goes well for you.

LLL

[ironwoman]

I just had an LP done one month ago.  The LP itself isn't that bad.  It did not, however, show any elevated oligio or clone cells, the tap was essentially negative.  85% of people with MS show the positive tap.  I have not received my official dx, but they will start treating me for RRMS after the other blood tests and visual evoked response tests are complete.  

From what I am reading, the more accurate way to dx our problems end up being a process of elimination, and clinical symptoms, as some of us test positive for things others test negative for.  Complicated, eh?  I am frustrated too.  I have been sitting in limbo for months now with not a lot of answers, but symptoms that have been difficult to live with.  Keep us posted on your decisions ok!

[poker247]

Kimmyarra,


I was a *limbolander* for 5-6 years before my RRMS was diagnosed in March of this year. With all my tests and Dr.'s appointments with 2 neurologists, one of whom is the head of the MS Society in New York and works at Strong Memorial in Rochester NY.

Both Dr.'s declined a spinal tap, because they said a good portion of their MS patients have had normal Spinal Taps, so they feel the results aren't conclusive enough.

As far as the low B12 and Thyroid tests. I believe they would have no effect on a MRI. The low b12 could be  undiagnosed Iron deficient anemia and the low thryroid could be from undiagnosed Hypothyroidism (under active thyroid).

My next question is are you currently on any meds for MS? because some of the medications rare side effects can effect the liver, glucose, white blood cells, and thyroid functions.

My hunch is your low b12 and thyroid functions are a pre-existing condition and NOT a result of the MS. I feel they would be best taken care of by your primary physician, not your neurologist.

Hope this info helps!

~Scottie

[em1228]

I to had low B12 on my bloodwork. So low I am on 2000mg daily and will be starting injections next month. I have been diagnosed and also my second opinion by a very prominent research dr confirmed. I do not see the point in going through the LP. I guess I would do it if needed to confirm but since I have a double diagnosis I am going to skip it.

Best of luck to you!

[Janette2836]

Hello
I wanted to let you know that when they started testing me over a year ago for what might be causing my symptoms, they did check my B12 level as one test.  I have heard that B12 defeciencies can cause symptoms that mimic MS.  Wouldn't it be great if your symptoms went away with just adding the B12!

If you do have to have the LP - for me the worrying about it before hand was much worse than the actual procedure!  Mine was so easy & fast!!!  IF you do get the LP done - make sure you rest & let the hole heal otherwise the spinal fluid leak will cause the spinal headache.  I tried to over do it too early & that was not good.  

Be well & take care

Janette

[kimmyarra]

Thanks to everyone for the helpful responses.  I feel really bad this morning.  I woke up to my room spinning. I made it to the bathroom, and got sick.  I usually get up by 7:30, but I'm still here in bed at 11:00.  I have a pcp appointment at 1:00
I'm not spinning now, but I'm very dizzy.  I really felt like I was having a stroke or something.  Numbness, chills, sweating all at the same time, and I heard a noise in my head for a while like a constant swish.  I have had to correct just about every word that I have typed .....What the heak is happening here?....So Scared......Kim

[Bliarg]

Constant swish in head...problems typing, thinking of words...and being sure of spelling...(is that how to spell it, yes, no, yes, no argh!!)...I know what you mean. I suspect MS, Dr thinks I'm nuts but my mum had it and I'm going through her early symptoms.  The psychological problems dealing with memory, cognition and interaction are a nightmare, and even if mine aren't MS, they're similar enough that I can truly sympathise.  

I have found completely avoiding lactic acid from my diet to be really helpful.  I also find mushrooms (regular store bought, not magic!) as my last meal of the day every now and then help me feel cleaner inside.,,,on that note, and I'm sorry if  Ishould put this in new thread (??) - does anyone else feel a kind of sluggish, stagnant, dirty feeling in their body tissues?  I don't know how else to describe it.

All the best guys.

[fdmh]

I am a limbolander, with specific sx since last summer.  I went to an MS specialist last week with my list of mainly sensory sx, but nothing lasting longer than 24 hours.  I too had 2 abnormal MRI's with 4 or more hyperintense lesions in the white matter of the brain.  I have also had congenital hypothyroidism since birth, and since I'm no 37, I don't know what tests were run on me as a child. Basically, I get regular blood draws and md adjusts dose as needed.  Well also last summer, my TSH was way wacko, very very low down to 0.04 I think.  I really wasn't sx of hyperthyroid, and that was very abnormal for me.  I went to endocrine and tested positive for having antithyroid antibodies.  He said hashimoto thyroiditis (thyroid disease due to auto immune, antibodies that attack your thyroid) can cause neurological sx as well as MRI changes, specifically fewer than 5 of these areas in white matter.  I've seen numerous evidence to suggest this is true.  So it wouldn't to have that done, I'm convinced.  Don't see thyroid as the answer, but definitely have them both worked up, if that makes sense.  My MS Specialist stated that autoimmune thyroid problem still put you at a higher risk for developing other autoimmune sx.  

[babyatlas]

i hope you feel better soon and get some answers that you are looking for.
i had my LP a few weeks ago.  the actual procedure was a breeze - it's the aftermath that took me down.  i laid down for 48 hours straight afterwards and still had those post-LP headaches.  so, i laid down for 2 more days before i did the blood patch....sweet relief....but my back was sore for a good two weeks and i had sporadic headaches.

i, like you, want some answers or at least to rule out more things.  if you had asked me two weeks ago if the LP was worth it, i would have said NO but now, with the pain/discomfort behind me, i can only say YES as hopefully the results will help answer some questions.

R