Thanks a lot for the postings,
I'm learning that we need to be active with our doctors, and know I understand why they hate internet...
I have to confess that even after 3 doctors said I don't have MS I'm still worried, and at this point if I learn I have Lyme it will be blessing (altough I know all the pain behind it, it is still better than MS and would stop my daily pain wondering about what I have and what will be the next symptom).
Also due to the subjectivity of the symptoms (nobody can see them...), it's hard to talk to family, friends, about it, I'm glad I found this website with these wonderful doctors that give their time (while other don't spend time with you paying for the appointment) and people like you supporting and helping each other.
Thanks you all! :)
Hi hikerunner,
Would you mind telling me what symptoms you had? I'm living with weird neurological symptoms for over 1 year, and all my doctors say they don't know what I have, and that I shouldn't bother looking for another doctor because they will say the same, but they did only a few exams (and all to exclude MS). I just learned you can have Lyme without the rash ...
Thanks
rcs2
First of all keep in mind that I am unable to diagnose you since I am unable to examine you, this forum is for educational purposes. The symptoms that you describe are complex and do not fit nicely into any single disorder, but I can give you a list of possibilities and a diagnostic approach based on the symptoms you have listed.
First, was your concern over lyme disease. Lyme antibodies are often negative during the acute disease, because the Borrelia burgdorferi (spirocete that causes Lyme) is immunosuppresive and thus the test is often negative. I would recommend re-testing and a trial on antibiotics to adress this. Lyme disease can cause a number of the symptoms you described including numbness/tingling, headaches and mood changes (neuro-psychiatric changes). I would recommend a SPECT scan of your brain that looks for vasoconstrictive disease that alters brain function that would not show up on an MRI.
Second, there are a number of things that can cause transient symptoms in neurology among which include stroke/TIA (transient ischemic attack), seizures, migraine headaches, and toxic/metabolic disorders. It is unlikely that yo had a stroke due to your apparently normal MRI, and TIA would be less likely (though not impossible) given your age. Seizures can cause episodes of numbness like you described and transient paralysis, also called a Todds paralysis. Migraine headaches can also be associated with numbness and paralysis in some cases and are referred to as "classical migraine". This is difficult to diagnose, since there is no test, and is often a diagnosis of exclusion. Toxic/Metabolic disorders can also cause these symptoms, such as acute intermittent porphyria, periodic paralysis, and mitochondrial disorders.
To begin your analysis I would ask your neurologist to consider an EEG (for seizures, it may take a prolonged EEG to capture one of your spells), the SPECT scan already mentioned, and blood/urine work to include lyme titers, lactate/pyruvate, ammonia, ceruloplasmin, serum amino acids, urine amino acids, urine organic acids, urine tests for porphyria, ESR, CRP. I hope this has been helpful.