No doctors here can agree on anything. Limbo forever….

May 18, 2010 at 1:48 pm

I have been diagnosed with Fibro, CFS, CPS, depression, Sleep Apnea, Restless leg syndrome, blood clotting probably due to a genetic flaw and many more things.
I have a good many brain lesions as I have been told I had them so I studied hundreds of normal and abnormal MRI’s and compared them to my copies on CD. I try but I am not good at reading films except to see the damage to my Optic Nerve. It ain’t brain surgery.. I had optic neuritis more than once and lost visual acuity in my left eye in 2006. Before that I worked yrs where it wasn’t too bad, but then 15 years with leg pain first in one leg then in the other and sometimes both and all over. I had always been clumbsy and had odd things happening like shivers down my spine, vibrations in my legs, months of bursitis and tendonitis coming and going all at once after making my life miserable. I had tremors in my head,and my hands. I had the feeling water was running down my leg or a bug was crawing up it, with compression stockings on. I also make blood clots including DVT. I have been sent to many Neurologist. 3 EMG’s showed peripheral nerve damage, sensory and motor, and MRI’s showed demeylination and lesions, gliosis, and Optic Neuritis,in my brain. I was diagnosed for year with “small axon polyneuropathies”, Peripheral Neuropathy, and was told I would never go blind or lame. My spinal cord fights to give up it’s fluides and both were abnormal with high proteins. I have had dysarthia, dysphagia, vertigo, falling over, down and upon people, joint failure, and nystagmus, episodes of coughing, very loud hickups and all kinds of muscle spasms, myokymia, clonus, and paresthesias/or the very painful ones, all over my body. I have had respiratory distress with no loss of oxygen levels according to those finger things, but it sure felt like it. I have had the hug so bad I had to hang over a bed to breathe. My worst problem is the longest problem in my right hip area and left legally blind eye that has been for 4yrs. The last test I gave in to was a Tourtellotte spinal test abnormal with overall high proteins but very high Albumin and also low blood serum. Recently I saw what I always swear is the last Neuro when he tells me he is just sure my autoimmune disease is C.I.P.D. but I left him my 2006 MRI’s that the Cleveland Clinic said were compatible with MS in 2006 when I lost my vision and got serious about it. So I have peripheral nerve damage with lesions on the brain that look like MS, and two abnormal VEP’s and 2 abnormal Spinals and 3 abnormal EMG’s and I will have another Fri. The insurance has seen all this a bazillion other things and now they are balking at IVIG treatment (by the way both C.I.D.P. and MS afflictions are treated with IVIG). I want to get better so I have to have another EMG. I don’t mind them. But no more spinals because they were both done by professionals and they had to use many needles and that did not hurt so much as their pushing against my spine trying to make it swell up. I am just so tired of everything and waiting.