Post Vaccinal Encephalomyelitis

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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Post Vaccinal Encephalomyelitis

Postby 4me76285 » Tue Apr 20, 2010 7:10 am

First, I am new to the forum and would appreciate any comments or help anyone is willing to provide. I am still confused and not able to focus or concentrate very well. I was first diagnosed by a very prominent neurologist in early October of last year 2009. My Dr. refers to this disease as post vaccinal encephalomyelitis. Can anyone tell me is this at all related to ADEM or TM as I have been on heavy steroids, pain meds,anti depressants, anti convulsive, etc. for nearly 7 months now. The symptoms are very difficult to deal with each day. Especially the muscle spasms, head aches, double vision and chronic fatigue among others. I know none of us have a crystal ball, but I just feel like I have come to a stand still improvement wise. Prior to getting ill I was a very outgoing, energetic, hardworking and very healthy 51 year old male. I just feel like my whole life has been taken from me at 51 years of age. What is the longest anyone has suffered and are any of the damages permanent? Thanks in advance for any comments.
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Re: Post Vaccinal Encephalomyelitis

Postby Louise E » Tue Apr 20, 2010 8:16 am

Sorry to hear you are having such a difficult time, I've been living with TM for 5 years and have experienced many of the same symptoms at various times. Your diagnosis is different but I suggest you read a very informative posting titled "Neuroimmunologic Disorders of the Central Nervous System". Look under the General Discussion section of this forum to find this posting which was put there by Jim Lubin. Hope this info is useful and that your condition improves.
Best wishes
Louise (Australia)
Louise E
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Location: Australia

Re: Post Vaccinal Encephalomyelitis

Postby edward » Wed Apr 21, 2010 4:07 am

4me, I had ADEM in March of 08. They dont know how I got it, I was in a coma for 8-9 days and came out of the coma paralyzed from the waist down. Have had all the symptoms you describe.
Intense leg pain, spasms, stiffness. My face was numb bowel bladder etc....
I decided to go it without meds after studying neurotin and bacolen and other drugs once I got out of the hospital. I will say it was pure hell. But even now more studies have come out about bacolen. I'm not against drugs but there is always a trade off. I have read alot about neurotin and how the body needs more and more to get the same effect. I have read one study that found it can inhibit healing. I worked out six days aweek three times per day for the first four months and then tapered down to three times per week with walking everyday.
Today I am almost fully recovered. My spasms are more like the legs tensing for a few seconds
maybe 10% of my waking day. I have pain in one leg that remains but I can cope.
Bowel and bladder are almost normal.
I can walk and run and do everything I did before all this.
I did alot of probiotics, Vit. B12 ,D , Omega three, protien. I not suggesting you do it without meds because it was the worst hell I have ever gone thru especially the first six months. But looking back I fell like I healed quicker and more complete without all the drugs.

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