In 2015, my family practitioner decided to think outside the box and do some more extensive testing. He said someone of my age (at the time I was 32) shouldn’t be having all the symptoms that I do. He was suspicious of Multiple Sclerosis.
He ordered a brain MRI which came back saying, “IMPRESSION: TINY PUNCTATE HYPERTENSE LESION IN THE POSTERIOR MID RIGHT PARIETAL WHITE MATTER MEASURING ABOUT 3 MM. A FOLLOW UP MRI OF THE BRAIN IS RECOMMENDED IN SIX MONTHS TO REEVALUATE. A COMPLICATED MIGRAINE IS FAVORED. EARLY CHANGES OF DEMYELINATING DISEASE CANNOT BE EXCLUDED.”
6 months came and the same lesion was still there. My neurologist ordered a spinal tap to see what showed up. Everything was in range except I had a finding of Oligoclonal Bands. “Note:
Jul 17, 2015 03:49 p.m. MST
The patient’s CSF contains multiple restriction bands that are also present in the patient’s corresponding serum sample. We are unable to define whether these gammaglobulins are of systemic or intracerebral origin. Oligoclonal bands are present in the CSF of more than 85% of patients with clinically definite multiple sclerosis (MS). To distinguish between oligoclonal bands in the CSF due to a peripheral gammopathy and oligoclonal bands due to local production in the CNS, serum and CSF should be tested simultaneously. Oligoclonal bands can however be observed in a variety of other diseases, e.g., subacute sclerosing panencephalitis, inflammatory polyneuropathy, CNS lupus, and brain tumors and infarctions. The clinical significance of a numerical band count, determined by isoelectric focusing, has not been definitively defined. The data should be interpreted in conjunction with all pertinent clinical and laboratory data for this patient.”
My neurologist wasn’t confident that I had a MS diagnosis but agreed to send me to the Mayo Clinic and see John Carter a leading MS Specialist. He told me MS patients typically have more lesions and if it was MS it’s at the very beginning stages. Since then I’ve came back positive with the following :
Late Stage Lyme Disease
Epstein Barr Virus
Coxsackie A & B Virus
along with multiple nerve issues in my arms & legs and now I pee my pants if I cough or sneeze. Also my sleep specialist told me it’s possible my sleep apnea could be nerve related and that the nerves in my throat are causing me to stop breathing so many times an hour? Not totally sure on that… but I don’t snore and don’t have any other reasons for why I would have moderate obstructive sleep apnea.
I found an article that linked viruses and MS https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4758194/
Also with the criteria changes on the MS Guidelines it then appears I may fall into that category.
Over the past summer my condition worsened and functioning became very difficult I was sent for another Neuro-Psych Evaluation. The specialist diagnosed me as having a Major Neuro-Cognitive Disorder with multiple etiologies; Lyme Disease & Traumatic Brain Injury.
6 months later I’m sent to the leading neuro-cognitive specialist in the nation, Dr. Sabbagh at Barrow’s Neurological Institute. He said I was his youngest patient and he does not think my cognitive decline is due to an Alzheimer type origin but rather a consequence of my diseases. He did diagnose me with Pseudo Bulbar Effect And after looking at years of test results said he thinks I have MS and is sending me to a MS specialist to confirm.
What about the Lyme Disease?
Is it possible all my issues still fall under that umbrella? Is it common for Lyme Disease patients to also get MS or be misdiagnosed?
I did have a bullseye rash from something when I moved to Illinois in 2010.
My health drastically declined after that. But, I also did see Dr. Stephen Fry an Infectious Disease Specialist who by his specialized testing wasn’t convinced that I had Lyme Disease and rather a protomyxzoa rheumatica infection. He said if it is Lyme I should feel better after 6 months of high dose Doxycycline. I had herxheimer reactions frequently, but never got better. So is it Lyme or not??
Please if your in my boat, feel free to share if you have found any more research that is helpful.