Dear Denise:
Dear Denise:
I note that your doctors strongly suspect a demylinating condition; the CCF doctor also suggested SLE, which I assume is lupus. Have you ever been tested for anti-phospholipid syndrome (APS)? In particular, have you been tested for some of the more obscure anti-phospholipid antibodies, specifically anti-phosphatidylcholine, anti-phosphatidylserine and anti-phosphatidylethanolamine?
APS, also called Hughes syndrome, is an auto-immune blood clotting disorder that in one of its forms also involves an auto-immune reaction/attack on the lipids that make up myelin - hence the confusion with MS/Lyme disease/lesions. About 50% of people with lupus also have APS. You also can get APS without lupus, however. Do an internet search - there is a huge literature on the condition. Dr. Graham Hughes, from St. Thomas Hospital in London has written a number of good survey articles on the condition. Look him up on Medline and work your way from there.
In my case, I was negative for all of the standard lupus and APS blood clotting tests. When I told my doctor about my cognitive problems, however, he jumped up and down and ran blood tests on me that he said have a high correlation with cognitive problems. Sure enough, my antibody levels on these tests were extremely high. My understanding is that these tests are relatively new in the last two to three years, and researchers do not yet know what positive results really mean, other than that positivity is correlated with cognitive problems, lesions, and folks diagnosed with MS who do not follow typical progession of MS. As the tests are new in the last two to three years, you may need to go to an academic medical center to get them performed. I notice that my results show that they were performed by a company called Labcorp. My doctor ran each of the three tests listed above, each in IgG, IgA and IgM form (that is, nine tests total). Five of my tests were normal. The other three were sky high - more than 10 standard deviations from the norm.
Renoguy,
Thanks for the info, I have had my BP checked often and it is okay, but was your diagnosis from the specialist the BP problem or something else. Sorry if I didn't get that part! Good luck to you.
speech difficulties (like tongue tied)and unable to get my thoughts spoken.
==============
While you are at it, you might want to consider getting a blood pressure monitor and monitor your BP.
I recently suffered from speech difficulties and the inability to speak. I would know what the word was but could not say it.
Ultimately ended up in the ER. Best guess in that I suffered from a Transient Aschemtic Attack (TIA, and sorry if I cannot spell.) When the attack hit, my BP rose to 206/131.
Since the attack I noticed a slight balance problem.
I am not a doctor and am only relating my own personal experience.
=============
Also,if you can afford it, or your insurance will pay, consider going to a top notch medical facilty for an evaluation. Last year I had a serious hypertension problem. After a while with no relief in sight and my then current insurance about to expire, I went to such a medical facility. Based on the first blood test, the same one run locally the first time, the doctor says, I am 90% sure I know what you have. It took another 10 days to run the follow-up tests, but he was correct.
When I asked him how he was so positive, his answer was that he sees my kind of problem on a weekly basis while the average practictioner might see one every year or two.
Dear Denise:
Sorry to hear about your seizures and abnormal MRI. There are two studies that are used to define MS by MRI criteria. One is by Fazekas for T2W images that require two of the following 3 findings: a lesion next to the body of the lateral ventricles, an infratentorial lesion, and a lesion larger than 5 mm in diameter. This has a specificity of 96% and a sensitivity of 81% of being MS. The other study is by Paty et al. and requires 4 hyerintense lesions or 3 lesions larger than or equal to 3 mm, with at least one periventricular lesion, which strongly suggests MS. Except for the parietal lobe, you didn't mention where the other lesions, and how many lesions, wer located. There are 2 disorders that are difficult to separate from MS, neurosarcoidosis and vasculitidies. Neurosarcoidosis presents with the use of contrast, meningeal enhancement around the base of the brain or a beaded pattern over the spinal cord, and this is not found in MS. In SLE, there is predominantly subcortical white matter lesions rather than the periventricular lesions seen in MS. Two other tests that might help are the VEP test and opthalmological exam. It is alittle unusual for a person to have a normal CSF study, especially in light of multiple brain foci. Was the total panel of MBP level, oligoclonal bands, IgG synthesis all normal?
Judging from your medication, you have partial epilespy. Where is the epileptogenic focus? Your cognitive problems might be related to your epilepsy? How well is your epilepsy controlled?
I am not sure what you mean by high parietal lobe? If you mean that the lesion is near the central region then you might have sensory deficits, if it is lower in the parietal lobe then language might be affected.
I am sorry that I am not able to help more. Much depends on how well your epilepsy is controlled and the location of your lesion.
Sincerely,
CCF Neuro MD