Hi, I am 56 year old female. I was 32 (1985) when I was first diagnosed as having MS or small strokes, due to white matter lesions on my MRI. My LP was clean. My symptoms at that time progressed to where I could not walk a block, could not use my eyes to read because of the double vision, could not sign my name because my hands would not stop shaking, my body hurt from spasms and I had constant migraines. My hands and feet had numbess and tingling. This continued for many years, up until 1989, when I was placed on Premarin. I had a hysterectomy in 1978, and had only one ovary left, so the Premarin was to help with my estrogen. Little did I know that Estrogen would later be found to be useful for helping women go into remission.
However, I did go into remission for 14 years (1989 to 2003). During those 14 years I did suffer occasional bouts of headaches, pain and spasms, but they were short lived, and only occurred if I got too hot, or worked too hard.
Then, in or around 2003, I went off my Premarin due to the government's report that Premarin caused cancer of the breast. I had no idea about the link of Premarin to MS. Within a year, I began to start having serious headaches, then dizziness assailed me. I was so dizzy that I could hardly drive, it felt like I was on a boat, going up and down, for over a year and a half. Since then, I have had more MRIs and more white matter lesions appeared. I now have a large array of lesions. However, my lesions are NOT in the area that they should be for MS lesions. Nor do I have a positive LP puncture; I just had a negative LP with the highest overall protein at 46. Also, I do not have optic nerve damage. However, I have severe double vision, and migraines on a 24 hour basis. I had one severe ischemic stroke in March of 2008, and now have small strokes almost once a month; I no longer go into the hospital when I have them, as they are gone within a hour or two. By the time I am in the hospital, and in the CAT scan, it would already be over. If I go in for every problem, then I would worry that the staff would think that I am malingering. In 2006, I had a back surgery, and then it was discovered that I needed oxygen. No understanding as to why I need oxygen. I am overweight, but my lungs are not compressed, as my lung function works well. It appears to be neurological, although I do use a BiPap machine at night to sleep. The CPap caused me to much muscle pain. My oxygen oscillates back and forth, up and down from 94 to 71, up and down, for no obvious reason. It isn't because I am active or not active. It simply oscillates. Yet, no one seems to care, they just plug me with oxygen and say, keep it on, who cares WHY you need it.
I am a thinking person. I am married to a physician, who is as puzzled as I am. He is also a professor and teaches, so he trys to find out what is wrong with me. Together, we try to find someone who will help piece this puzzle of what is wrong with me ... and help put humpty dumpty back together again.
I have lost so much memory. Sometimes, I don't know who my husband is. I know that he is my husband, but I don't really know who he is. It is scary. My Neurologist now says that I do not have MS. Positive. NO MS. Just like that. No MS. He says it is vascular, but he does nothing for it. Sort of let's just wait and see what happens next.
I feel like I am left on a back burner to simmer without anyone watching me, and I might just simmer away to nothing. Should I not be taking something to prevent further damage??? He says no!! I am on regular meds. Celexa, Topomax, Omeprazole, Lipitor, Estradiol, Cyclobenzaprine, Gabapentin, Propranolol, pain meds, small amount of Diazepam as a muscle relaxer. But ... nothing ... absolutely NOTHING to prevent a further attack. NEVER have I ever been given anything to PREVENT an attack. Isn't this rather strange? Or, is it norm?? I would just like to know if this is all normal, and I am in good hands. I know no one can tell me for sure. But, does this sound normal to you doctors out there?? Just a quick note would be nice. Thanks.