My story is quite long and I will try to make it as short as possible. It all started 11 years ago with Chronic headaches that I had 80+% of the time. As time went on I was set to a Rheumatologist who DX'ed me with Fibromyalgia and other Central Nervous System Issues. As time progressed I was put in the hospital twice for my headaches and one time I was in the hospital for 3 weeks in a Headache Unit. They did a Lumbar Puncture to rule out low fluid and some other things and for some reason they did an MS profile. I was told I had 4+ O-bands present and I was to see a MS Specialist immediately. I have had numerous MRI's that have come back clean, but I have since hd 2 more Lumbar Punctures and I was found to have 3 bands on the second and 2 bands on the 3rd...
I was sent to an Infectious Disease Dr. to rule out issues like Lymes Disease. I was found to be clean. I have progressively gotten worse. I have terrible brain fog, I have a numb patch on my back that has defined borders. It truly feels like someone taped a kick me sign to the middle of my back. This might last for 1 month and then be gone for 2-3 months and then come back in a smaller area. I stumble on a regular basis and I have had a terrible bout of Vertigo that lasted 4 days, I could not move without holding onto the walls. Once that severe vertigo past, I know have problems with closing my eyes, example in the shower and washing my hair. I get dizzy and have to lean against the side of the shower. In regards to showering I have a terrible problem washing my hair.. I have to take a break because my arms cant take it. Same thing with blow drying my hair and I have quit coloring my hair because I cant keep my arms up long enough to apply the color.
The headaches have continued but lessened a bit after nearly 11 years. I have terrible insomnia, Restless Leg Syndrome, occasionally tingling in my hands and feet and numbness in my finger tips. My vision is declining quickly, I cant put my finger on it, but it like a combination of blurred and double vision. Due to the insomnia I fall asleep at the drop of a hat except when I should. I can be driving and get so tired I have to switch drivers or pull over. It happens in less than a minute, if I feel it coming I had better get off the road. My balance *****.. if I squat down I usually fall backwards. I have a very hard time getting up bleachers at the high school. my legs are not strong enough to push myself up. I have to side step or sit on the bottom. If I squat down to get something off a low shelf, I sometimes cant get up.. My legs just have no strength to push me up.
I have been tested for Lupus numerous times, seizure disorders, Infectious Diseases, Allergies, you name I have had it done. All MRI's are clean, but the LP's are positive. I was told by 2 Dr's that it is MS, but neither are Neuro or MS Specialist. They would not make the official DX. I went to a new Neuro who is 71 years old and he said if he had seen me 20 years ago he would have said MS without a doubt, but the MRI's cause him to hesitate. I asked if I could be in the 5-10% that never sow lesions and he said yes.. I do need a test that has never been done and that is the Evoked Potentials. That is scheduled within the month. I got frustrated with the DR when he said I would be positive for MS 20 years ago but he was hesitant now. I looked at him and said "Then what is eating away on the myelin in my brain? I would not have O-Bands unless there was demyelination taking place and I have known of the positive test for 5 years He said he had no idea but to come back in 6 months. I got pretty heated and so did my husband.. I said what happens in 10 years of this demyelination if it goes unchecked or untreated???? I am sure I have missed several symptoms, but what are your thoughts???