[julieanne43]

Hi i am new to the board and am looking for info and support. I am so confused and scared! I was diagnosed in 1993 with Fibromyalgia and was devastated by the illness for about 3 years. I learned ways to deal with it and took meds and adapted to a new way of life. I would have times of the year where I would be in bed, but for the most part I went on with my life.
Then in 2003 my life changed and now I have no normalcy and the future is so uncertain! In 2003 I started having temporary blindness in my right eye but my vision would come back. Then when I would be walking in a straight line it would feel like i was falling over. Then from there I had dizziness,pins and needles,electrical shocks,numbness that would move to different parts of my body,burning sensations,feeling like I was sitting sideways in bed or falling over,double vision,flashes of light in my eyes. I had ct scan to rule out stroke right from the start. I then was passed from doctor to doctor because I have no insurance. Each Dr. felt I had all the symptoms of M.S.. I had MRI with and without contrast it was negative. They did MRI of my spine without contrast and it was clear. The only thing they found was a small cyst in the right temporal lobe of my brain. The only bad thing was if it becomes larger they would not be able to remove it because of where it is. I was referred to a Neuro and he did Evoked Potentials and they were negative. I had a Nerve Conduction study and it showed slowed down response and he diagnosed Neuropathy. I have had MRI's once a year to monitor the cyst but nothing else has shown. In the mean time I have all the symptoms I had at the start and some new ones like falling over if my eyes are closed while standing, swollen lymph Nodes from my left shoulder down to my elbow, cramping sensations in my arms and legs, weakness in my legs and my arms,slurred speech, wake up and i have lost use of my feet, and my arms, my hand one morning was dangeling from the wrist with no sensation or use. I have spasms all over even around my eyes. I have been unable to get allot of the testing done because of a lack of funds, no insurance, and we have a combined family of 6 kids. We recently scraped and saved enough for me to go back to the Neuro. I went and he listened to my list of symptoms and then examined me. He said right off the bat that I have PolyNeuropathy but that he felt it was secondary to an Immune System Disease. He then said he wanted to do an EMG to see what diseases would fit the damage shown on the test, and then he said he would send me to a Rheumatologist to track down what disease is causing it. I am so scared because I know it is something bad!! I know allot of damage has been done and I am petrified it is something like ALS. I cant talk to my husband because everytime I try he jokes about it, I just feel alone in this whole thing! I worry what will happen to my kids? I dont think my husband could take care of me and the kids and I dont want to burden them. I feel allot of guilt because I cant take care of them and they dont have me to lean on! Well I think I have loaded you guys down with information overdrive so I will close now! Any info you guys have would be greatly appreciated
Thanks Julie