Need more Mimic ideas

[CorgiHill]

Hi!  I've been going through a work-up since July for Possible MS.  So far we have this:

5 Oligoclonal bands unique to the CSF not found in the Serum
Small Punctuate lesions in the Frontal Lobes; no other lesions
MRI was done of T-Spine, C-Spine and Brain, with and without contrast
Lyme Test - Negative
Syphillis - Negative
ANA - 1:40 Nucleolar (considered negative)
SED Rate - 27 (normal for my age)
EMG - Normal
Nerve Conduction Study - No Peripheral issues so Normal
Sarcoidosis - Chest CT Normal
Paraneoplastic - No tests done but no symptoms either; 99% ruled out

My symptoms are right side numbness in the thigh/calf; Ribs spasm on that side
Nerve pain in hands (mostly right hand)
Nerve pain in toes (mostly right toes)
Crawling sensations along ribcage; feel like water is running down the back of my legs
Itching on palms of hands (mostly right), scalp and right toes
    Comes on suddenly, last for a while and disappears
Vision issues including 3 bouts of optical neuritis; diagnosis is sub-clinical optical neuritis
Heat intolerance
Fatigue - very severe in afternoons but I pick up again by around 4ish.

I was seeing a neurologist who fired me because with no classic lesions there an be no MS and he doesn't see anyone who does not have MS.  My primary care doctor has been the one to do all the rule out tests and is referring me to CU Denver to see the MS specialists  there.

I'm taking Gabapentin for the nerve pain and Tizanidine for the spasms in my ribcage and hip.  I tried Nuvigil for fatigue and it was a total disaster at 75mg.  We now have a note in my chart that stimulants are a bad, bad, thing for me.  

I'm at a loss.  With the o-bands and so many symptoms it's pretty strange that I cannot get a diagnosis.  I can be a great party trick when I fail a Romberg Test and cannot drunk walk even though I don't drink.  I've had to cut my working hours down by about 75% this year, just too tired and I make a ton of mistakes if I try to push through.  If I rest appropriately I get good quality time to do a few things and that's where I concentrate my efforts.

Any ideas of further mimics to rule out would be helpful.  I really don't want to go all the way to Denver (from Idaho Falls) and be told I need this, this and this test before they'll weigh in.   It's going to get COLD in a few weeks and driving those long Wyoming highways is BORING.

Thanks or any ideas.

AnnaMarie

[karryon55]

The 3 blood tests for APS or Hughes Syndrome are :-

1) aCL (or) anticardiolipin antibodies
2) LA (or) Lupus Anticoagulant Screen
3) anti-B2GP1 (or)  anti-beta2-glycoprotein-1

It is important that all 3 are carried out & then repeated 6 to 12 weeks if necessary.

Great information on:-   hughes-syndrome.org

APS was recently named after the founder Professor Hughes. As a symptom they actually include MS because it can produce many of the symptoms MS can.

I was so worried about this mimic of MS that I got myself checked several times. I do have other autoimmune problems though so I wanted to be sure. To ensure there is no confusion the Lupus Anticoagulant does not mean you have lupus & is separate to ANA.

Good luck.

Karry.

[CorgiHill]

Thank you for the links!

Yes Vitamin D and Vitamin B12 have been worked up.  Both are in the high normal range.  sigh....

I'm in a pickle in a small town.  ONE MS Neuro in this town and he doesn't want to do the work, only takes "classic" patients.  But, I can travel, and I will.

Hmmm.... have not been tested for APS, putting that on the list.  Thank you!

[karryon55]

Hi there & welcome,

I don't see the 3 blood tests for APS or B12 studies. There are many many more things to rule out. This should not be your job to be finding these things out. You need a good Neuro. I'm sorry you are doing what your Neuro should be. :-(

It's all too common to see this. I would definitely do what ess is suggesting.

Good luck & keep us posted.

Karry.

[essdipity]

Hi and welcome.

I get SO annoyed with neuros like yours. Their thoughtfulness and imagination run the gamut from A to B. Not all MS lesions, by any means, light up and blink and sing 'Look at me! I'm MS!'

Classic MS lesions certainly make things easier for doctors because they don't have to think. Maybe thinking is an alien concept to them, who knows. The main reason some lesions are called classic is that there are also non-classic lesions, which do require thinking, in the context of lots of other considerations, including rule-out tests.

I certainly can't tell you whether or not you have MS, but I can say that lots of other contenders have been eliminated. What you need is a better doctor, who will do his or her best to track everything down, and at the very least, keep following you to see what develops. Yes, this will probably mean travel for you, but you can probably avoid many blind alleys by doing some thorough web searches, finding out which medical reports likely candidates would be interested in, and having everything forwarded in advance of any appointment.

A good place to track down competent doctors is the website of the Consortium of MS Centers. Good luck.

ess

[rendean]

HI AnnaMarie,

It sounds as if you have had a pretty thorough workup. I don't see a Vitamin-12 value. In our Health Pages ,located to the right of this column, are 2 articles that might interest you. The first is a Page about mimcs and the testing done to rule them out and the second Health Page is how you can have a negative MRI and still have MS.

I had everything ruled out and after my lip biopsy to rule out Sjogren's Syndrome (since I had erroneously been treated for that for years since my lesions didn't fit the McDonald Criteria), I received my diagnosis. I finally found a neuro (#7) that wasn't a "lesion counter" and he ran every test over again and I  received a diagnosis after 4 years of testng.

I hope this helps and and sending you good vibes that you find an answer soon!

Here are the links:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

I hope they help!

Rendean

[HVAC]

May be Lupus that is one they ruled out with me after I had 12 o-bands in the CSF and not the blood. I had a classic MS brain MRI and it took two years and 6 Neurologists before I was diagnosed with MS.

Alex