Odd Symptoms - Neuro can't explain

Question

For the past year I've had odd symptoms with no diagnosis.  In January I began having sun burn like nerve pain on the top and inside of my thighs.  Tight pants or cold wind would make the burning worse  This has occurred on both legs at the same spot and continues today.  I am not affected by heat but cold weather seems to make my symptoms worse  I also had extreme fatigue for a couple months but that has let up.  The muscles in my legs twitch as well as occasional twitching in my arms.  I have bouts of brain fog where I have trouble concentrating.  In addition my legs feel achey around my lower thighs and knees.

I had an MRI of my brain, C spine and T spine which were normal.  I also had normal EMG and NCV tests.  I have tested negative for Lyme and Lupus but my ANA test was a low positive.  My vitamin D levels were at a 12 originally which is very low.  

Neuro says he doesn't think this is MS.  Anyone with similar symptoms that thinks this is MS?  Should I have more testing done?

ConstanceEarlene · Answer

I had an MRI that showed lesions and my doctor diagnosed Primary Progressive MS: unlike relapsing/remission MS, the symptoms only get worse and there are no drugs to help. I didn't READ the MRI; I only know what it feels like every day: fatigue in my legs mostly, cognitive problems, walking problems due to foot drop, imbalance, falling and gait; spasticity, joint pain, exhaustion after doing very little. Only a neurologist can diagnose MS, but my chiropractor knew from tests and my complaints. Hope that helps.

kwarendorf · Answer

Hi - 

All by itself, a high ANA titre isn't indicative of anything, other than the presences of inflammation. It doesn't tell you anything about the cause of the inflammation. Specific patterns can suggest more likely causes, but unfortunately homogeneous isn't one of those patterns. 

I would still be inclined to look in a direction other than MS.

Kyle

mjlbs23 · Answer

Thanks for your reply although saying you had all of the above isn't very helpful - can you elaborate on your symptoms?  How many MRIs did you have?  Does this sound EXACTLY like what your symptoms are like, which was implied.

mjlbs23 · Answer

Thanks for your response Kwarendorf. Now that I think about it, I had two ANA tests, one was positive 1:80 and the other one was much higher 1:320 - these were both homogenous pattern.  Not sure if this changes your opinion

mjlbs23 · Answer

I was on a vitamin d regiment and believe my levels have increased to the correct range however still on the low end. I do not contact dermatitis although I wish it was that easy. Thanks for the support calamfred.

karryon55 · Answer

Hi there, I was wondering if you had an MRI of your lumbar spine? After reading what you have written with your symptoms I would have thought checking for spinal damage (discs, facet joints etc) would have been considered. 

Your discomfort is in your lower limbs so it wouldn't hurt to check the hips as well as your lumbar spine. Just a thought.

Karry.

ConstanceEarlene · Answer

I had all of the above. I was DX in 2010 with PPMS on the second round of doctors.

kwarendorf · Answer

Hi - The symptoms you describe don't scream MS to me. Typically MS presents on one side or the other, not both. The tests you've had also point away from MS. The ANA in active MS tends to be high rather than low.

Kyle

calamfred · Answer

Hi,
Are you on a vitamin D regimen now to get your level up? Mine was a 13 when it was tested. Some Drs will put you on a high rx dose of it for a few weeks to get it back where it needs to be, then you can take an OTC dose. Vitamin D deficiency can cause slowed thinking and aches, among other subtle symptoms. 
My hubby has MS and Addisons. I have Lupus w secondary Sjogrens as well as IC. Raynauds can cause burning pain, and cold makes it worse, but it usually affects the hands and feet...
Lastly I wondered about a contact dermatitis of some sort? Since you say tight pants make it worse..like maybe a new laundry detergent or softener? I know this is unlikely, as it would probably cause symptoms other places clothing would be in contact with your skin...but just tossing ideas out...
Hopefully you will get some answers soon.
Take care,
C