What to do next?

I have had a laundry list of symptoms, including migraines that last for 3-4 days with no relief from pain medicine,  cognitive difficulties (confusion, inability to understand whats being said, inability to understand what I read, etc.), dexterity issues, loss of balance, weakness in the left side, hypersensitivity in the left side, hearing problems and blurred vision on the left side.  I began treating with my family doctor about a year ago for Vitamin D deficiency, however they have been unable to get my vitamin D def. under control. My symptoms continued to get worse and I had a loss of vision for approximately 2 minutes about 2 months ago.  The ER referred me to a neurologist who ordered a complete MRI, brain, C-Spine, T-spine and L-spine.
The MRI came back with with multiple lesions in my brain and a possible one on my spine (there was a poor quality on the films due to movement, so it was non-specific and could have been an "artifact") I went to see a MS specialist who stated that my symptoms did not seem to be MS, however she wanted to to do a spinal tap to rule it out.
My questions are:
Should I wait and get another MRI in 6 months (as most of the information available seems to indicate) before getting the Spinal tap?
Could the Vitamin D def cause the lesions?
What other diseases present with similar symptoms?  

[Sparkysarah]

Hi and welcome to the forum. Your post has slipped onto the second page without any answers so hopefully this may catch the attention of some of the more knowledgeable folks here who can give you some suggestions.

If it was me, and your neuro has suggested it, I would be inclined to go for the spinal tap (although I admit that I have never had one and was glad that I did not need one for diagnosis).  You could always then have the MRI in six months time to see if there is any change.

I am not sure that a vitamin D deficiency causes lesions, but I beleive that it can be a link in the puzzle and if you put Vitamin D into the serach engine on the top right hand side you will find there are many posts and information about this.

Let us know how you get on and I am sorry that you are going though what feels like a very frustrating time of uncertainty.

Best wishes

Sarah

[dd3m]

Thank you for the support!

[Demian425]

Hi, I have to admit I stumbled onto your question somewhat by accident, so I hope my answer helps. Several years ago, I developed many of the symptoms you describe, though my problem turned out to most likely be something known as Elsberg Syndrome (they still haven't been able to definitively diagnose). At first, however, they thought it might be MS, and I agree with Sparkysarah that you should go through with the spinal tap if your neuro recommends it.

I've had two of them and they're not as bad as you would think. If you saw The Exorcist and you're thinking that's what the procedure is like, you're very wrong. It's relatively painless, it's over in about five minutes and the only real problem is that you need to spend about the next 36 hours lying flat on your back. Since the pressure has been lowered in the spinal column from the removal of fluid, you'll get a really bad headache if you get up and try to walk around too soon. But that's the only real side effect and it's not dangerous, just painful.

You might also ask your neuro about a test called evoked potentials. That was another test my neuro did and it ruled out MS definitively (the spinal tap was also to test for pathogens, in addition to myelin proteins). Might want to run a google search on evoked potentials, and maybe discuss with your neuro.

Hope this helps, good luck and God go with you.

HS

[RedFlame]

I would definately have the spinal tap.  It could help you in the diagnosis and it isn't that bad, I have had two and if you do everything you are told you won't be in pain.  

I don't understand why the MS Specialist thinks your symptoms don't match those of MS.  You could have more than one thing going on one of which could be MS.  It can take so long to get a diagnosis and receive treatment, it's such a difficult time.  So many 'rule outs'.

Hang in there.

Welcome to the forum too!

Red

[figuerpa]

I would get the spinal tap. It can only help with the dx. I know the thought of a spinal tap is horrible but as Red said it really isn't a big deal. The before hand worry is much worse than the actual procedure.

Please keep us informed of what you decide.

Paula

[dd3m]

I had a visual evoked potential that came back negative.

[Lulu54]

My LP was not bad at all.  I was immediately ok to sit up and my neuro said there was no reason to stay flat, either.  He has a perfect record of doing LPs though - never once had a leak.

The problem is from the lp there is nothing to plug the hole where the needle goes in to extract the fluid.  You want a neuro to use the smallest needle ever possible.  Unlike blood, CSF does not coagulate and it is possible that the incision hole leaks.  That is where the being flat until  the incision site seals is necessary.  I hope this makes sense.

Good luck with moving forward on your decision .... I would bet that even if you wait 6 months for the next MRI this doc will also want the LP then to confirm the dx.  

welcome to the forum here, Lulu

[lpt7131]

Hi,
I am not diagnosed but have "suspicious" lesions and various symptoms.  Remember that a negative lumbar does not rule out MS but does give a great bit of information if it is positive.  My doctor sent me to the hospital where it was done with floroscopy (sp) or x-ray guidance.  Nothing to eat for six to eight hours before, admitted to hospital (just as precaution), go to room, lie on stomach on a table under x-ray equipment (with a pillow under my stomach).  He did say he'd have to take extra time because of my lumbar fusion and that can affect the x-ray picture.  The nurse explained everything first, then doctor came in, area cleaned, sterile field made, etc.  Lidocaine injected (the worse part and that is not bad) which is like a pinch, then another to put the numbing agent deeper, bigger pinch.  Then waited a few minutes.  Then I felt a little pressure and could hear/feel a little pop-like feeling or sound which is the needle going into the space needed.  Did have to do that a couple times--I was nervous but not hurt at all.  He constantly asked if I was okay, etc.  It took about 25 minutes.  They did have me lie flat for one hour, then I sat up in bed for two more hours in the "recovery" area.  

Silly me, I tried to go into Home Depot to look for a flower pot after (which lets you know how good you will feel) but the headache hit and I definitely kept quieter rest of the evening.  For the next four days, I would get an awful headache if I was up longer than ten or so minutes...but lying down fixed it or my pain (migraine) med. if it lasted a little longer.  But I wouldn't be afraid to do it again if I had to.  I think you should feel like it's okay to trust your doctor for the most part.  Take care!  And don't worry...
LPT