I first started to notice changes in Oct. 2015. I had an increase in migraines; intensity and frequency. I went from having 6 a year to 14-20 a month with multiple trips to the ER. My Nero (migraine specialist) started me on Topamax; side effects were gone within 3 weeks of target dose of 100mg a day...about middle of December. Right after Christmas the 28th to be exact I had horrible pain behind my left eye with movement, and it was slightly blurry. I had an eye check up the next day so I addressed it with her. My pressures were all normal. She was concerned and wanted me to contact my Neuro because she thought I could be suffering from Optic Neuritis; nothing I took helped my discomfort. I called him, and he blew it off. This discomfort went on for 3 weeks mind you. On top of that I noticed that my face would go numb, and I would tingle on the left side of my body only. I was also having severe dizzy spells even while sitting. I tried to convey to him that at times it feels like I'm bouncing while sitting; after long durations without changing positions.
The end of January comes along and warm water feels very hot on my back, and my neck is hypersensitive to touch. Any light touch would send it into a wounderful spasm. Within 3 days I was in full blown constant "spasm" and any touch, even the wind blowing would make it worse. When he saw me he gave me Zanaflex and told me it was stress from nursing school, but ordered a while new set of MRI's (head & cervical spine w/ & w/out contrast, thoracic spine w/out contrast) and basically said...if they're normal I don't know what to tell you. I have lesion in my R frontal lobe it does not enhance but it can be seen with and without contrast.
When I could not function on the Zanaflex because I was too tired and asked for Baclofen he told me I just needed to see a psychiatrist. I told him my head stops moving when I touch my face, and did he think it was Dystonia...his words were "No, you're just in need of a psychiatrist. There is nothing physically wrong with you." The movement disorder doctor who was in his office did see me said I had Dystonia, but her notes states it was in my head. My head "twitched" for 5 months. I was not stressed about being in school. I was doing extremely well, and didn't even need to study.
I went and had an elective psychiatric evaluation done, and to figure not somatitization or conversion disorder.
For 5 months I dealt with a twitching head, 3 weeks painful eye movements, 1 week a tight sensation around my left knee, 3 months my last 2 toes on my left foot were numb all the time, 3 months of bladder/bowel problems, extreme fatigue, painful muscles in my legs. Before all of this happened I had a severe sinus infection in September.
Finally in April 2015 I got to my new Neuro. He ordered a new MRI (T3) I had an enhancing lesion in my L ON, and they same lesion on my R F.L. Some of my symptoms were subsiding. He decided to order a L.P. No OG bands, no protein, but my Igg index was elevated, and my Serum Igg was way down. Makes sense since I catch every cold, cough, sinus infection under the sun, and I can't kick it.
I did notice a few years ago that I can not handle the heat at all...it makes me itch, and very tired. It still affects me the same way now. I never thought much of it until the last year.
Within the last few months I've had a lot of problems with my legs. Mostly my right one; thigh to be exact. It feels like there is a constant knot, they ache, and at times I walk horribly because of the pain. I have had full blown spasms so bad while standing that I have to lean on whatever object is nearby to get my weight off of them. Being a nurse I work with some awesome doctors, and PA's (one is my PA from my PCP office). I didn't realize that I was experiencing spasticity. Now I take 20mg of Baclofen every 6 hours and sometimes that doesn't feel like it's enough. My PA also me Solumedrol pack to help break the spasticity cycle I was in recently. I notice its worse when I drive, and sit for too long. The one thing that concerns me now is I still can't fully straighten my leg, and it looks like my leg is turned out? What's worse is my Neuro says I may have CIS, but I don't have MS. Yet, I had an Internist tell me I absolutely do based on my last MRI stating that a demylinating disease should not be ruled out, and my symptoms taken collectively as a whole. She's been a Dr. for 20 years, and worked with hundreds of MS patients. Now I'm waiting to see the MS Specialist in my area. I'm so confused.
How long does everyone else's exacerbation last? What triggers them? How long did it take to get a diagnosis? What makes your spasticity better if you suffer from it?