Neuro Dx with demylinating disease of cns from lyme disease.
One neuro in the same practice called ms and demylinating disease of cns the same thing. But the big difference my neurologist says that my demylinating disease of cns is from lyme disease and the damage it has done and continues to do. He does believe in chronric lyme but he is not sure if the demylination is caused by dead fragments of the bacteria and live bacteria.
I had lesions 3 yrs ago that one dr kept coming back to ms. He pretty much ruled out all other problems. Then he sent me to a ms "neurologist specialist". First visit he read file and film and said he thought I did probably have ms. He wanted me to have a cervical mri to see if there were any additional lesions there.
2nd appt, I took the MRI back to him and his nurse told me he was in a hurry before he came in, he had a plane to catch. He came in didn't look at my file only the new cervical scan. Said there were no lesions. I was just like his wife. I needed to realize I was getting older and would have aches and pains. There was not problem. Be thankful. I ask him about my first visit and checking his file. He backpedaled. Never apologized. Told me to come back in 6 months. I was so fed up that I left with no intention of ever returning. I was in tears. So I stopped seeing any neuro for 3 yrs.
Started seeing a lyme specialist since I knew I had tested positive and wondered if any of my symptoms could be lyme related. Seems most of the lyme symptoms are also MS symptoms. I was tested and was positive for Babesia (a red blood parasite) and my Lyme Dr felt I also had Bartonella but that is a hard one to get a good test result on.
The one thing that my neuro said Monday was that he noticed I had been diagnosed with FM in 93. (5 yrs after lyme) I actually received disability on FM. An I guess I do have it. It is a symptom of a disease. He said he did not believe it was a disease but a symptom. You need to dig deeper to find the cause. When I started going to the Rhumy for FM, my symptoms, were headache, numb lt face and pins and needle lt arm. Other areas would come and go, pain, pins and needle, cramps, neck stiff, lower back pain, swollen ankles, cough and sometimes a lump in my throat.
The in late 90 I had surgery on my neck. cervical fusion. Had to repeat, first didn't take. I know feel that surgery was unnecessary. Then 2002 went to neuro with double vision. Bad headaches, arm and face. lesions showed on the mri. Then when I started seeing the LLMD, he had a spect scan run. It showed abnormal blood flood.
Week ago Sunday, I had my 4th tremor attack. They start violet shaking. Nausea, headache, neck pain, ear pain. face pins and needle into arm lt side. Shakes off and all all night. Cramps in my legs. Major reflux. Big time reflux.....pain, fist in my chest, chest swelling like a balloon. Then after 12 hrs it turned into violent shakes from head to toe. After couple hours, it eased off. The next day it came back much worse. Now mainly its headache, achy muscles, some tight muscles. major fatigue, and rt hand and arm tremors.
How long have some of you had MS. How has it progressed. Any info or advice is appreciated.
Last edited by Pearlscale; 03-07-2007 at 09:53 PM.