Ms or possible OPCA

[clumsyJ]

I was told possible MS in Sept. of 05. So far dx with optic neuritis, nystagmus, RLS, Trigeminal neuralgia, postural & intention tremors. I have a family history of OPCA. I am 47, female and feel like I have been tested for everything under the sun. Now I have to wait 6 months for another MRI to compare.

Brain MRI; In subcortical white matter of right frontal lobe, area of abnormal signal, possibility of demyelinating disease should be considered. Multiple other etiology exists. LP; no o-bands. MRI C,T,L spine; C5-6, Mild reversal lordotic curve with degenerative disc changes. Axial images demonstrate moderate diffuse annulus bulging changes at all levels. Spondylitic changes and mild spinal stenosis. Mild bilateral neuroforminal encroachment. Study is otherwise negative.

I have numbness, tingling,muscle spasms and pain in both legs. My legs tend to buckle for no reason and I fall. Dizzines, double vision, tightnss around my ribs and one ankle. Short term memory is terrible. Pain and numbness left side of face and tongue. I was having burning sensations but neurontin 300mg 3x's a day has taken care of that. I'm also on baclofen 10mg 3x's a day for tremors and pain.

Does this sound like MS or OPCA? I hope its neither but if it has to be one, hopefully its MS, at least there is treatment. OPCA is a death sentence, I know this because of family history. Also have MS in family and other autoimmune diseases, ie.. Lupus, RA, Degenerative joint, and Hypothyroid. I am hypothyroid and take 50mcg levothyroxine once a day.

Thanks in advance for any info

[ele60]

A related discussion, help for OPCA was started.

[CCF-Neuro-M.D.-PW]

The term OPCA was defined when the diagnosis was based on clinical symptoms and MRI findings. This is still the case for sporadic/non-genetic OPCA. Genetically inherited OPCA is now termed SCA or spinocerebellar ataxia. There are over 20 genetic forms of this disease, each with different genetic tests and different (sometimes characteristic) clinical presenations.

I don't know how clear or defined your fathers diagnosis of OPCA was, as this would be important in terms of your diagnosis. ALthough I cannot give you a clinical diagnosis over the internet, your set of symptoms could be consistent with MS, but the pattern of symptoms is more important, for instance, have they occurred in a 'relapsing-remitting' fashion or in a more progresive pattern. Relapsing-remitting patterns suggest MS. The absence of oligoclonal bands is unusual for typical MS. It is not clear to me whether you have OCPA/SCA or another disorder without a full history/examination.

Genetic testing for some forms of SCA/OPCA are available. As there are over 20 forms, and the tests are expensive, a neurologist familiar with these tests can narrow down the selection of test by the clinical history, examination, and MRI. Perhaps another opinion if genetic OPCA/SCA is suspected, at a center experienced in SCA testing would help. Also, see the NIH site www.genetests.org for details on testing and who does it.

Good luck

[joshua217777]

What did your neuro say about the scattered nonspecific white spots?  Thats exactly what I had in my report and hadnt seen anyone else with that til I seen you.  Mine told me be many things, from a old stroke to MS to migraines or previous traumatic head injury.  But said she didnt think it was anything serious.  Is that what yours said too?

[Insearchofinfo]

joshua,

No, apparently my neuro tells me that there is no way he can tell me nothing to worry about especially since I am experiencing the physical signs of numbness and tingling.  he gave me a lot of possiblities.  I will get the report and post his findings which include those possiblities.

All I have to say is this stuff is so unclear and I am so scared.  I guess the brain is a complex organ.

[Insearchofinfo]

clumsy,

How long have you had these sypmtoms and how often?

I have no answers for you but I am 45 and I too have had numbness and tingling in my limbs and I am very concerned.  Seems to get worse if I am stressed.  An MRI of the brain showed scattered white matter or non enhanced lesions but not typically in the areas where MS is usually located.

I have my symptoms daily and have had them for about 6 months since having a pretty severe staph infection and taking Leviquin which almost killed me.  I had all sorts of horrible side effects including the feeling of ants crawling all over my body and the docs wouldn't take me off the meds until I ended up in the hospital with a pulse rate of 246.  I couldn't breathe, my heart palpations were unbelievable and I was severely depressed.  I was kept on 750mg a day for over a month.  

I have no history of MS in a very large family base.  I live in the south and I am Hispanic so I don't exactly fit the profile for potential MS.

I was also diagnosed with breast cancer 8 months ago and had to have a bilateral mastectomy.  I lost my reconstruction to the staph infection and now with all my neurological problems, don't know if I can go back through the reconstruction process.  I am devastated.

[clumsyJ]

My problems started 8-21-05 to be exact. I woke up with flashing lights in my periphial vision in left eye. Eye doc said vision was 20/200in left eye only, went to neuro-optho and was dx'd with optic neuritis. Since then I've slowly gone down hill. My current neuro is doing injections in my back but it only helps for about 5 days Then I'm worse then before. Last time ended up in ER because the muscle spasms caused sooooo much pain. I've fallen 3x's in the last 10days, not fun. I use a cane but my PT says I should get a walker just in case.

[bengalcats]

I to have things on my mri that concern me, this is what mine said.

a very small number of punctate T-2 bright signal foci are noted in the subcortal white matter bilaterally.which are non specific and not definitely pathologic. I truly wish they would explain these meanings better, my dr said they are from headaches but I do not agree, I have a host of other symptoms like hand, arm and leg tingling which is worse whne i go to bed but not as much during the day, blurred vision, occasional numbness, decreased sensation to hot and cold on my legs, weird creepy feelings in my brain ect. I fdeel I have MS and questioned my neuro about the spots on the mri and he said its nothing!!!!! I wante dto kick him ,they need to realize our fears and not be so hasty to get us out of the office!I do not know why they just dont say, its possible that its MS, lets watch and see for a few months since it is so hard to diagnose.

[joshua217777]

I dont have the tingling numbness, mine is assoicated with limited neck range of motion if I turn my head too fast, numb/pressure in my head and face and daily headaches.  She diagnosed me with migraines but I dont agree.  Ive never had headaches before.  I had torticollis severe muscle spasms 3 months ago, went to the chiro and ever since that visit starting that day daily headaches, numb pressure like feel in my head and face and jaw.  My dentist referred me to see a TMJ specialist because I guess TMJ can cause similar problems, and can cause tingling in your arms as well if your muscles in your neck and back spasm and pinches nerves.  I noticed on my mri report it says tiny nonspecific scattered white areas without enhancement probably abnormal for my age.  So at some point in age it must be normal so maybe its just age related and just aging a little faster who knows.