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All the symptoms but negative test results

I have had persistent cold spots on my legs, arms and lower back since November 2009. I finally saw my doctor about it in May and his first thoughts were MS. After a little research I found that I also have some additional less obvious symptoms.  I have had a brain MRI and much blood work, and seen a neurologist who tells me that everything has come back normal. Yet my symptoms not only persist but have gotten worse.  I'm thinking about getting a second opinion.  Any ideas on what it may be other than MS?  or is there anyone else out there that had  a similar experience and was eventually diagnosed?  Just feeling a bit like I'm crazy.
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Avatar universal
Hi Reenie!

I'm sorry you're dealing with this situation - I know how ridiculously stressful all of this stuff is.  I'm really hoping you get some answers!  

I don't have MS, I think (and I don't have any diagnosis yet!) but I've had a lot of trouble with cold spots too (eventually they turned into creepy-feeling patches, and then mostly pain).  They've been around for about as long as yours, since the fall, and they've been spreading - started out only in my legs, and then moved up.  I found these TOTALLY freaky - I bet you can relate! - but still for some reason I haven't actually gone in to see a neurologist about this... so I don't have insights from a doctor to share with you, just my own research.  Ha, for what that's worth :P  

But, what I found with mine is that they correspond really well to charts of dermatomes - have you seen these?  I guess they are the areas of skin supplied by each spinal nerve root, the branches of nerves that come off your spine out between each vertebrae.  From what I gather, when these nerve roots get injured or irritated, they tend to cause problems like cold sensations.  I'm wondering, could this be what's up with you?  I've read that one of the causes of nerve root issues is lyme disease, as well as any number of things that cause low-level chronic meningitis.  Also, maybe the roots just get irritated sometimes, for no known reason? Ha, I don't know, I am no doctor!  But I just wanted to throw this out there, in case this applies to you.

I really hope you do get your answers!  And I hope you stick around this forum - I think at the very least it just helps to hear from people who know how crazy all of this stuff is too!!

Wishing you luck :)

Louey
Helpful - 0
233622 tn?1279334905
Have you had an LP?  I am one of those people who have symtoms that look like MS.  

My brain MRI is abnormal but does not scream MS.  I have had Optic Neuritis twice and I have significant weakness in my legs

MS specialist diagnosed me with MS.  He retired to I had to find another doctor.  I found a quack who undiagnosed me.

I took the advice of a person I know with MS and went to her doctor.  He did the one test no one else did and that was the LP.  It came back showing 14 O bands.  That locked my diagnosis.


So I would do an LP if it has not already been done.

LA  SPMS
Helpful - 0
572651 tn?1530999357
Hi Reeniegirl and welcome! This is a great place to come with questions such as yours.

Unfortunately we have way too many people in this community much like you - people who have symptoms but no concrete evidence on their tests.  Diagnosing MS can be quite difficult and time consuming - I suspect many just give up and live with their strange symptoms rather than keep pursuing answers.  

We have excellent health pages here that can explain a lot about the diagnostic process and even more about this MySterious disease.  I hope you will take some time to learn more - an educated patient can help this process along,

the index page for the HP's is at

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36

good luck and I hope we will see you around again.
Lulu
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