Follow up on in Ala., Ramsay Hunt Syndrome, a whole NEW thing, ug

[Guest guest]

Everyone,

I have been in the hospital because I did not get better from the facial

paralysis and I had nontypical symptoms of Bell's Palsy.

So I wanted to follow up with you all to let you learn about a very

interesting thing I was FINALLY diagnosed with.

First off, NO stroke, and continuing to rule out MS, but not 100% sure,

but closer now. My MRI's did not change in a year on the two demylination

lesions that I already had. A relief. And, the ACM has progressed and

changed a bit, but not too much they said to be an acute emergency. May

by one mm and the 4th vent. has a bit more fluid in it.

I have RAMSAY HUNT SYNDROME, a different and very RARE (again!!!) disease

that leaves you

with things that mimic BPalsy, but is not BPalsy.

There are differences and this is not the place to go into it, but I just

wanted to give you all an exact story that I had to look up just now,

because when they told me what I had in the hospital, again I did not

know what it was. Just like chiari. There is very little info. and very

little research and very little help.

So, the next page is a great story to read. Almost mine IDENTICAL.

Comforting to know, again that you can relate and there is really a thing

to be causing this, but not nice to know that this has to be hurting

other people too. Anyway, this is a great one for those interested in

know what is going on with me.

http://pages.ivillage.com/smokey361/bellspalsy.html

The thing I know it is the shingles. (Herpes Zoster that originally comes

from Herpes Varicella - chicken pox) And, it attacks the face and neck

and into the arms sometimes which it did me and that is why they put me

in the hospital thinking I had a stroke again after the Christmas stay.

And you also loose balance and sensation in hands and a lot of other

stuff that mimics ACM, so they actually wanted to put me in to re-check

the ACM progression! They did not say that this may not be related to

what is going on with me because of the ACM and that there was just not

enough study. And, I saw 2 neuros, 3 cardiologist (for consults with the

stroke part since I had atrial fib, and they said that I probably have

POTS for sure. But I did not get the test. I was on a heart monitor. And,

my blood pressure is up and down drastically) and I see an eye dr. now.

There are some main differences though that need to be clarified. But

this does affect the cranial and cervical nerves, which I find not to be

an accident, that is up for debate on the private talk I guess if anyone

wants to know. I'll talk with you, but my abilities to type and talk and

read are very debilitated now even more, so even this letter is taking

forever.

Here is a link that shows an interesting MRI and how close these nerves

when highlighted by the dye are so related to the area of our chiari

malformations, being in that exact area. The person on this film I am

pretty sure does not have ACM or there would be herniation. So, I am by

no means saying that everyone gets these kinds of things for sure if you

ACM. I am just saying it is interesting and Dr. Mueller and I discussed

this. She said there are a lot of ACMers with cranial nerve and other

related disorders of this kind. No conclusive studies yet, and I would

say it would be a very slim percentage to even add this to our ACM list.

Maybe a guess at 10-15%. A guess!

Here is the MRI page:

http://www.flash.net/~drrad/tf/052796.htm

Ok, this is the last one that I'd like to add because it is a good

general overview of this disorder in case some others are having similar

problems and need to check if this might be something that affects you

and you could not find out anything about how to go about getting a

diagnosis. Which seems to be our problem around here.

http://www.emedicine.com/neuro/topic420.htm

I hope I put all them in right, but you can just put that diagnosis in

Ramsay Hunt Syndrome RHS and get some pages to look at if you like on

your own.

The main things it does is paralyses one side of your face. Embarrassing

and a nuisance yes, but life goes on.

You cannot whistle or suck from a straw and such. Your face is distorted

mainly with movement, so you really don't look like you have anything

unless you try to use your face for laughing and or talking and such.

But, the image change, nonetheless is bruising. This is something I'll

have to live with and learn to overcome AGAIN! I am a bit angry, but

holding it together again. I know God can and will intervene.

Over half can recover somewhat, but will probably be left with some

paralysis. But, it does get better and can completely recover in some

cases (I take that prognosis).

The other terrible thing is you have what is called neuralgia, or in this

case PHN Post Herpatic Nerualgia.

The herpes type lesion comes from in around the ear area and gives you

like little fever blister in the ear.

I had that and around my nose and face. I saw one picture on my studies,

though where this man had a terrible break out. So, I was blessed in that

my initial breakout was not too bad with that. But, I did have the PHN,

and still do. There are some who have this for years. It is facial,

headache, mouth, ear, eye and other pain and is really bad. But, I have

learned to live with lots of pain, as you all know about here, so it is

tolerant with maybe one pain pill a day for me.

I also, am still on the massive doses of prednisone for a period of time,

and zovirax which is an antiviral. By the way, this is not below my neck,

shoulders and left arm. (Just for those interested, I know I was freaking

out on that one. And the Dr. reassured me that the genital herpes is

completely different and I wont get this down there. Thank God!)

The other thing that is dangerous is a chance for hearing loss, which I

already have some of, but seems it is not too bad. I have had some

transient complete loss of hearing for minutes there.

And, last but especially not least, one of the things that I'd like to

talk about after getting this is the possibility for severe cornea (eye)

damage. Please pray for me on this one. I have that part really bad. Your

eye does not blink unless you make it. So, you have to wear a patch most

of the time, to protect it and artificial tear goo. This causes me to not

be able to read, drive, or talk much with you guys very often, so I may

loose touch a bit. But know that I am always here trying to read and keep

in touch, and I love you all a great deal.

I am going to be very optimistic as I can about this, and I am going to

be one of the ones that gets well in the least time 4 weeks and has NO

permanent damage. How's that for optimism. God is out there and I know He

MUST be watching me.

(Interesting trivial thought, they said in some of the literature that

25% of people who had lymes disease come down with this. I had lymes

disease about 6 years ago. And, was treated, but the diagnosis was

missed, so my treatment was late. Also they said there is a 'thing' for

lack of what to call it in the csf fluid that shows this up

" pleocytosis " . So, whatever, the csf is affected too.)

Again, thank you for prayers, and I will be always thinking of you. Give

me about 4 weeks to get this eye under control and I can probably be

about chatting away again with you here at wacma. And, poo, I had to take

time off on my study of ACM that I have cranked up on the last 4 months,

making it a priority to learn. Because now I have another NROD disorder

to study. ug ug and triple ug.

Oh, and by the way, I contacted Dr. Oro and they want all the hosp.

records faxed. And, they moved my date up to an earlier time! Yeah! Now

Feb. 25. They said I should be well enough from taking the steroids and

build enough immunity back up to go ahead with the decompression. What do

yall think about that in the light of the new thing? Any objections?

in Ala.

ACM-I, spinal stenosis disc problems, spinal fusion C3-7, dysautonomia,

POTS, Ramsay Hunt Syndrome.

And, in the name of Jesus - I will stop there!!!!!!!!!!!!!!!!!!!!!!!! and

get rid of most of it anyway!!!!!!!!!!!

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