Avatar universal

Dr...please help. Where now?

I will try to be as short as possible, but that will be difficult if I want to include necessary information. I will do my best.
Let's go to what led me to my first major symptom:

Feb 24, 07: left sided facial numbness. Began as feeling of a burnt tongue. Full blown facial numbness within 3 days. Top of head to chin. Inner ear and mouth. This numbness greatly improved by early May, but I still have minor residual tingling. It is sometimes more noticable when I spend a good amount of time in hot weather. MRI(1.5) revealed a 5x16 mm active lesion in the left cerebellar peduncle. Several small rounded foci along both cerebral convexities w/ signal characteristics corresponding to CSF, likely representing prominetn CSF spaces.
Lumbar puncture was normal--no signs of infections.
All blood work is normal (thyroid, diabetes, B12, lyme, lupus, gout, RA etc.)

August 07: severe bout of vertigo. Another MRI(1.5) shows "improvement" of prior lesion, non active, smaller. No new lesions.

Jan 08: repeat MRI(3T) shows a 0.75-cm focal area of abnormal T2 prolongation is present in the left lateral pons near its junction w/ the middle cerebellar peduncle near the trigeminal nerve root entry zone. (not enhanced) A tiny focus of T2 prolongation is present in the left anterior deep frontal white matter.

July 08: Comparison made to prior 3T MRI of the brain shows there has been no interval change since previous exam. There has been no interval increase in the size or number of a few small foci of increased signal intensity deep to the anterior insular cortex on both sides. These small foci are nonspecific.

Now, the evoked potentials I had at the end of May 08 are as follows:

The VEP and BAER were normal.
The SEP lower limbs:
With stimulation of either nerve, a popliteal fossa potential was present (what's this?), but the subsequent potentials were poorly formed and could not be identified w/ confidence.
(I am guessing that this was due to the fact that I had trouble with how PAINFUL it was for me. I was in tears and now matter what, could not relax. It obviously affected the test results.)

The SEP upper limbs:
With stimulation of the left median nerve, the response over the cervical spine was not well formed, but an N20 potential was present over the scalp which had a normal latency of 19ms. With stimulation of the right median nerve, an N20 response could not be clearly identified over the scalp.
abnormal finding bilaterally

The MS specialist doctors notes also note: Deep tendon reflexes are 2/4 in the arms, 3/4 at the patellae, 2/4 at right ankle, 3/4 at the left ankle. The left patellae is also slightly more brisk than the right, and bilateral crossed adductors are present. There is no spasticity, but the right toe is clearly downgoing and the left toe is silent. Romberg sign not present.

I have also had two incidents 3 months apart in which a hand has swollen overnite, was painful and couldnt use. No bugbites. Xrays and labs normal.(first the left, then the right)A few months later, same thing w/ my shoulder, but they did find some mild tendonitis.(these incidents were back in 06)

I also have had unusual sensations when driving where my fingers will feel huge and the steering wheel like a piece of spaghetti. I have had if reversed also, fingers feeling skinny like spaghetti and steering wheel huge. About 4 times I have a feeling of my tongue feeling huge--not impairing breathing or swallowing. It's just a sensation.

Recently, I've had an issue with my feet. The bottom of my right heel felt like I had walked of rocks barefoot. It would wake me up at 3 or 4 in the morning, crying in pain. It was intense and hard to walk on. After about a week, some of the pain started to move toward the inside of my ankle bone...like the tendon area. The left foot had hurt a month earlier, but only near the tendons on the OUTSIDE of the ankle bone. These both lasted about 2wks for each foot.

Prior to this last MRI, my MS doctor has said he felt that the peduncle lesion was possibly viral related and the frontal lesion migraine related (Had migraine/tension headaches since 1992) and he was thinking this was less likely MS. But he wanted another MRI and EVP tests. He said if these tests were good, he'd wait 1 year and do another MRI. If that was good, he would release me w/ a NO MS diagnosis.

Is there anything abnormal in the neuro exam?
Are the small foci on the MRI anything concerning?
Is this abnormal EVP test going to help provide any clues?
Or is there still not enough evidence for diagnosis here?
Should I be looking at testing for other diseases? (Lyme?)
Where should I be going from here?

I do apologize for the length of the post. I just wanted to be as thorough as possible with my history in order to try and get as much feedback as I can. I am started to have a bit of anxiety because it seems nothing seems to match up.
Thank you.


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Avatar universal
bumping up. I know it's long. So sorry.
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