It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-07-2007, 08:49 PM   #1
Senior Veteran
(female)
 
Join Date: Aug 2005
Location: North Carolina
Posts: 1,247
Pearlscale HB User
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.

Prayers....Marsha

Last edited by Pearlscale; 03-07-2007 at 08:53 PM.

 
Sponsors Lightbulb
   
Old 03-08-2007, 03:42 AM   #2
Junior Member
(male)
 
Join Date: Jan 2007
Location: Middle of the USA
Posts: 34
jeff001 HB User
Re: Neuro Dx with demylinating disease of cns from lyme disease.

I am sorry you had to endure this neuro jerk, and this is a little off topic but.. We need to set up a web site and expose these jerks. Maby with a few hundred complaints online and these doctors can find a new hobby and quit emotionally beatting up on people. I have found it is mainly women that are abused in this manner. I have experianced this first hand but at nearly 6 foot and 210 not os fat pounds doctors think twice about insulting me (I have never gotten violent but I can look that way<giggle giggle>). But seriously how many people would buy software from a website that had a bunch of bad reviews? How many people would purchase things from a seller with lots of negitive feedback? I think I am going to setup a web site if there is enough interest, in doctor feedback. Anyone who is a patient can post an opinion of a doctor who's services they paid for. You should allways remember the doctor is your employee. You should not take insults from your employee. Because while a lot of these doctors mean well, they are not very good at it.

Jeff001

Last edited by jeff001; 03-08-2007 at 03:44 AM. Reason: correct spelling

 
Old 03-09-2007, 10:52 AM   #3
Member
(female)
 
Join Date: Jan 2007
Location: SC
Posts: 61
tiredbunni HB User
Re: Neuro Dx with demylinating disease of cns from lyme disease.

Marsha,

I only had a dx of MS since last December. My neuro is concern that there is progression going on because my legs seem weaker even on Avonex. He has put me into physical therapy to help with gait and mobility and evaluation. I took some more neuro tests that my neurologist didn't do. It seems that I don't have much strength in my legs and have problems with my arms. The problems with my arms is new to me. I couldn't feel much from the pin pick on fingers or legs. I am suppose to be at PT three times a week. I not sure what all this means. I know going out so much for my shot (I do it in the doctor' office) and PT is exhausting me besides doing PT for hour each time.

I have a question for you. Are you being treated for Lyme disease? I thought I read where a person with it is treated it IV antibotics for a year then they are cured. I know that Lyme disease is hard to dx also because of the test done in normal labs will come back negative. However, labs that know how to test for it (take 3 specimens) will come back positive. Has your doctor treated you for the parasite they found?

The doctors should have not treated you so badly. I know how that feels. When I first got hurt and saw my neuro in 1992, he didn't believe a chiropactor did it. He said it had to be from a car accident we were hit from behind from 20 years ago that cause FM. I was fine after the car accident. I did have my neck adjusted the right way because of minor problems. And I had no medical problems after that. I left his office crying. I knew he was wrong because after the what the chiro did, I was in the ER in severe pain. Then everything from the point on went downhill. Doctors never took anything I said seriously. I fought for every test. It isn't right. I was disabled two years later from FM ME/CFS and TMJ.

Are you dx with MS? What are the doctors doing for you now?

Marsha you are in my prayers. I hope that you find the right dx soon and a caring doctor.

Bunni
dx 12/06 MS
Avonex, Klonopin, Flexeril

 
Old 03-09-2007, 06:35 PM   #4
Senior Veteran
(female)
 
Join Date: Aug 2005
Location: North Carolina
Posts: 1,247
Pearlscale HB User
Re: Neuro Dx with demylinating disease of cns from lyme disease.

Thanks Bunni
I was diagnosed on Mon with demylinating disease of cns. From what I understand some drs think MS and demylinating disease are the same thing although some demylinating diseases are explained. He said based on my positive lyme disease test and I have had more than one positive test, he said my disease is from lyme disease. The neuro I saw is from the same practice that wanted to diagnois me with MS 3 yrs ago and I just didn't want to hear it.

I tested positive 20 yrs ago to lyme and was treated but not long enough. Didn't know it was still active in my body until 1 1/2 yrs ago. Also found I was infected with Babesia and Bartonella. Babesia is a blood parasite from an victor as tick, black fly, even mosquitoes have been found to carry lyme. At that time I started IV antibotics and had to have my picc line pulled twice due to complications. Then tried to move to oral meds to treat lyme and again had problems. My body is fought so much it cannot handle the meds very well. Have found elevated liver functions several times and we have to back off treatment. I have treated two rounds (3 days a week) for the babesia and we found after a few months the symptoms came back. Then we tried in late Jan to do another round and this time I had the elevated liver functions again. I haven't been able to treat either as long as my lyme/infectious disease dr thinks I need to be treated. The lyme dr I see has been treating lyme for approximately 5 yrs and has treated over 600 lyme patients from all over the country. And there is no for sure way to know you have killed the lyme. It can morph into several different forms when threatened by abx. And it can change into a cyst form and lay dormant for a long period of yrs. It can cloak itself with the host tissue cells and hide from the immune system. The immune system then thinks its ok because its part of the body.

Back in the summer (over 6 months into treatment) I had a bullseye rash which is CDC positive for a active infection. So at that point I had not won the battle.

The treatment for treating babesia is usually a minimum of of 4 rounds of treatment. Sometimes many more than 4.

This week (especially today I have had muscle cramps/pain all day). So many of my symptoms are part of my every day life, I only think of them when they get really bad. The tremors had almost stopped yesterday, but today I've had some in both arms and hands and more of a headache. Not bad but more than yesterday. The last really bad spell I had was about a year ago and lasted for several months. But I'm hoping now that I am on baclofen, it will help stop them quicker.

I'm reaching out to you guys because I am at a loss. New to this demylinating disease or ms whatever you call it. And a little scared. Knowing I have to stop lyme and babesia and my body not letting me do what I need to do.

Thanks for the info. I can read some websites but I know from lyme experience that someone facing what you are is your best source. Need all the help I can get.

Prayers....Marsha

(lyme, babesia, bartonella, veinious disease, and now demylinating disease of cns) Since lyme can affect every part of the body, not sure what else might be a problem.

Last edited by Pearlscale; 03-09-2007 at 06:41 PM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Appt w neuro need feedback k2626 Lyme Disease 8 09-01-2008 11:00 AM
Neuro-Lyme Questions aenima09 Lyme Disease 3 03-07-2008 02:27 AM
Neuro Lyme smith20 Lyme Disease 2 01-29-2008 02:10 PM
NEuOROLIST VS NEURO MUSCULAR DR cindys601 Multiple Sclerosis 6 01-06-2008 02:18 PM
Terrible neuro appt.....feel like bursting into tears!! Sarahlou Multiple Sclerosis 13 07-30-2007 01:42 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 11:20 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!