post viral rash - continued

[lori]

Comment By: Lori on Saturday, December 02, 2000



Doctor,

Thank you for reply. (SEE BELOW FOR ORIGINAL POST AND REPLY) They never identified the virus. I thought about the sun idea but my hair is styled in such a way that my temples and forehead are covered. Also, my upper chest has no wxposure to sun or wind. I had been tested for autoimmune diseases but was a little concerned that maybe the "post viral syndeome" is turning into something like Lupus. I had been on Clonazepem but off for 3 weeks. Doctor has me on Zoloft to "settle" the nervous system . Does this ever happen? I am scheduled to see a movement disorders specialist in 2 weeks because of the contiinuing ataxia.. I just feel so puzzled.

Thanks for any other insight.

Lori



Posted By: Lori on Saturday, December 02, 2000









(Drs.

I have been diagnosed w/post viral syndrome afer a June bout of larynthitis followed by meningitis. I have had a variety of neurological effects for the past six minths that wax and wane and some go, new symptoms come. The latest thing I have is a wierd skin problem that is on my temples, forehead, across te bridge of my nose and on my throat and upper chest. Not red (although in the beginning on my chest it was) but more like raised bumpy, almost scaly or dry skin but you can't really see any flaking or dryness. It's not associated with any cosmetics or new products that I have been able to identify since it started five weeks ago. WhennI had been acutely ill, I did have a red rash on upper chest and legs but this is not the same.



Is it possible ths could be just another mainifestation of the post viral cycle?



Does post viral syndrome ever turn into anything else that is known?

Thank you for insight and your time.

Lori



------------------------------------------------------------------------

Answered By: CCF Neuro[P] MD, RPS on Saturday, December 02, 2000









Dear Lori:



Sorry to hear about your problems. What was the virus causing the meningitis? It is difficult to tell you what the rash is from, this is especially true since most rashes really need to be seen to diagnose them. It almost sounds like it is on the sun exposed areas of your body. If you are taking medications, your skin might to more sun sensitive and this may be the reason for the rash. But, I can't say for sure. I would see your physician and see what he/she says.



Sincerely,



CCF Neuro MD)

[CCF Neuro[P] MD, RPS]

Dear Lori:



One does not catch lupus, although several drugs can give a person lupus-like symptoms but your not on any of these.  What did the MRI of your brain show?  did it should areas of increased signal, especially the cerebellum?  Was the meningitis really encephalomyelitis or cerebritis?  Often, we see encephalomyelitis that is post-viral with residual symptoms such as ataxia that usually resolve with time.  I would still suggest talking to your neurologist concerning the MRI, and what he/she thinks is causing the residual ataxia.  Simple labs of sedimentation rate, C50/C3/C4, white blood count, ANA, etc. will help see if you happen to also have lupus in addition to the ataxia.



Sincerely,



CCF Neuro MD

[Doug Theobald]

This is a message to everyone involved with the "post-viral" threads of late - if you would be willing to give me your e-mail address and talk about things, I am interested (Lori, Joan, Amy, Tia, Maggie, Gary, Rae, Jennifer, Mr.B, Lee, and anyone else). I personally have benefitted greatly from hearing everyone's stories, and learning that I am not alone in all this.  I would really like to know how everyone is doing, now and in the future.  



Thanks and good luck,



Douglas Theobald

***@****

[Ronisundiagnosed]

My email address is ***@****

I am very interested in any info on post viral syndrome.

[lori]

Doug, Ron, Linda, Moi and Others posting about viral and other problems:



I have just returned from a very thorough consultation with a movement disorders specialist.  The post-viral syndrome problem is real.  While each of us have different symptoms, many are the same.  Perhaps what I learned today will be helpful to some of you.   One thing that the neuro suggested is a re-testing for Lyme.  He said the early tests were not valid because you must wait I think 4 - 6 weeks before anything would show in the blood.  He explained that the head movements, twitchng and some of the other neurological problems may very well be because the body/brain have not yet totally learned the appropriate health responses.  The virus is gone but the system "remembers" the way it expressed itself when the CNS was damaged or under attack from the virus.  He said it may be possible to help "retrain" the brain through physical therapy, biofeedback.  He also suggested that there is a high potential of psychosomatic response that is not well understood (not the stigma given by most of society and some doctors unfortunately of "making it up") but again, a memory in the unconscious mind of trouble and a response that is no longer appropriate.  There were not too many hard suggestions on how to handle this because it is not well understood.  Finally, he said most people do come back to normal over time but that some did have lasting neurolological affects.  He could not predict how long or which category I fell into.  Bottom line, seeing a really good, patient and smart specialist has been a help.  I would suggest Johns Hopkins, Cleveland Clinic or Barrow Neurological Institute.  Good health to all.

LP