We've almost solved the puzzle......specific MS questions

[MochamommyCC]

I am a 40 yr. old female, that has had symptoms since 1996.    I've been tested for everything, and essentially all that remains is MS or lupus.  I don't quite meet the criteria for either! My questions specific to MS are as follows:

1.  I understand that up to 25-30% of MS patients have a high anti-nuclear antibody (ANA), which is really more used for lupus diagnostics.  I have no other lupus antibodies, but do have an ANA of 1:1280 which is extremely high, as anyone in the medical field will know.  My question is whether or not an ANA this high is possible with MS, or is the high ANAs seen in some MS patients usually of a lower titer?

2.  How can I know whether the pain I am experiencing in my elbows, knees, ankles, jaw, neck is truly joint pain vs. parasthesias?   The pain is there at rest and movement, there is no redness or swelling (just a feeling of warmth, though not literally to the touch), and there is nothing in particular that helps with the pain.  It is very random.  How can I tell if this is true joint pain/arthralgias vs. parasthesias?

The other MS-like symptoms that I have are a neurogenic bladder (confirmed by urodynamics testing), fatigue, and headaches.   I had a 3T MRI done of brain and spine in 2005 (9 years into symptoms), with nothing unusual.

Any thoughts on my questions or which path to continue to pursue would be greatly appreciated.

Mochamommy in KY

[deborah0904]

I have sensations of pin p r i c ks, tingling, patches of warmth and am told those are parasthesias.  Maybe this will help you.  I had symptoms for almost 17 years before a lesion even showed on my brain.  It may be possible to have symptoms without the lesions.  My spinal tap didn't show any o-bands but I had elevated csf myelin. I was just diagnosed 11/10/08 and a confirmation of the MS on 02/10/09.

[MochamommyCC]

Thanks, Deborah.  What other symptoms did you have?  Did they rule out lupus with you??  I did have the spinal tap with showed nothing (but that was only in about year 5).......I had the EVPs, everything..........I hate thinking that there is treatment out there that I need to be getting to slow this down if it does wind up being MS :((

Can you tell me more about your symptoms?   Were you 'sick' for 17 years or did you have symptoms off and on?? Did they look at lupus, too??

Mocha

[jensequitur]

I don't usually experience pain in my joints.  When i have pain, it's either paresthesia (typically in my face, hands or feet - I guess where the most nerves are) or spasticity in my muscles.  

Because of your joint pain, I would think fibromyalgia or lupus would be a possibility, but of course I'm no expert!

[PastorDan]

I've had joint pain since dropping 720 lbs. of bacon on my knee in a factory when I was about 19.  (If I make it another 5 weeks or so, I'll be 52.)  Never related it to anything but that.  Ortho doc said he could do an exploratory for nerve damage, but thinks the chances of making it worse are as great as those of making it better.

Lately I've been having warm or cold spots on various parts of my body, mostly limbs, when there's obviously nothing in the environment to cause them.  I've also been having tiny little muscle twitches (left leg, ring finger, both upper eyelids, and back of neck, a little right of center) though different parts of them; if it weren't for all this other stuff, I'd put that off to stress.

Is my memory right that ANA is measured as part of the CSF?

[Trace420]

I don't have any answers (sorry to say), but I just wanted to let you know that I have EXTREME joint pain (including jaw), as well as muscle pain more typical of fibromyalgia, and MS is one of the things my doctor is thinking due to other symptoms.

It also seems like a lot of people with MS (and I'm just going by the postings I've seen on forums, not by hard statistics) also seem to have fibromyalgia - so maybe you have some overlapping disorders?

MS is such a weird disease, the symptoms can vary so much. Hang in there; eventually we'll get our answers!