[tonyaocala]

A question please.........
Went to a neuro today and he looked over my Labs (blood work), Venus doppler of lower extremities, Carotid Duplex Scan, Transcranial Doppler Scan ( both the scans where looking for carotid stenosis and intracranial arterial tree or anything vascular in nature that could explain the lesions on MRI), X-Rays of lungs (because of the hx of Sarcoidosis), Everyone of those tests are normal !

The only thing that has come back abnormal are the (3) MRI's. (2) were done on a 1.5T and (1) on the 3T. All showing several lesions in the periventrivular, perivascular spaces within the white matter of the left and right parietal lobes and left frontal lobe. The neuro agrees that none of this is ischemic in nature (DUH!).

He then did the clinical test and the only thing that was not good was (as did another neuro) that when he taps the shin with the mallet, I am hyperflexic (?) and when I stood with one foot infront of the other with eyes closed, I could not keep balance.

After all that he said.....Well, you are a complicated case ( again i have heard those exact same words from 2 other neuro's in the past) because of having a dx of Sarcoidosis, The lesions could indicate either Neuro Sarcoid, MS, Or UBO's. I said "even though all other tests came back ok and the lesions tend to be in a MS area?"

So.....He says "Well for now I think I am just going to put this down as UBO's for now".

What do you all think about that? Should I "RUN" from him? Oh ya, I have not had an LP done because 2 neuro's agree that it would be a waste of time and money to do an invasive test like that just to get the POSITIVE results. That is because the LP results will show the same in both MS and Sarcoid. So it is not a usefull test for me.

Please tell me your thoughts. No one wants to give a definite dx of MS even though exclusion of tests, clinical exams, and MRI points to that because of having dx of sarcoid they think...Well maybe it COULD be neurosarcoid.
I am so frustrated. I do not know what to think.

Sorry so long,
Thanks in advance for your comments.
~Tonya

[weegot5kiz]

wish i had a magical answer, i am curious, have the neuro's all been MS specialist, if not maybe you need a neuro more defined, just a thought

[tovaxin_lab_rat]

Hi Tonya, I don't know what to tell you except maybe we have the same doc or trained by the same school of thought!

The neurosurgeon that diagnosed me told me after my first visit with him that I had UBO's disease. That was after my first exacerbation and first MRI. A month later when I had exacerbation #2 and another MRI with one more enhancing lesion, he changed my dx from UBO's disease to MS.

UBO=unidentified bright objects on the MRI. My first MRI had 6. MRI #2 had 7.

Sometimes I wish I still had UBOs. It was less complicated than MS! That last lesion has been nothing but trouble!