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In a message dated 12/14/99 6:53:12 PM Central Standard Time,

mcphoto@... writes:

<< Does anyone in the group know what helps jaw pain? Has anyone ever tried

heat or will that cause more inflammation. I am in such pain right now in

my glands below my ears and in the back of my neck, my nose is throbbing and

I also have pain in my jaw. I am about ready to scream and I am not

scheduled to see the doctor until January 6th. Obviously 5mg of Prednisone

>>

, I am so sorry you are having that right now, I understand your pain

w/the Jaw, mine lasted for 3 months " Heat " will help (Dry heat) 4-5 times a

day for 20 minn. What happened in my case was the " Pads " that connect the

jaw kept getting inflammed and wore down the pads, at that time I was raised

to 50 MG of the Pred and it took all the pain away and stopped further damage

to the site. This is one thing that " HAS " to be stopped or you can get

chronic TMJ which will make life a more living hell for us, I have good Info

on this if you want it let me know by privte e-mail and I will send it or

feel free to call me for more info. You should also have a X-ray called a

" Panaramic Surround " to view any damage to the Pads.

P

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In a message dated 12/14/99 6:53:12 PM Central Standard Time,

mcphoto@... writes:

<< I also have a constant rash on both sides of my nose

which I am very concerned about. >>

, When I get that they test my " ANA " and when I have the rash there the

" ANA " is always Positive w/ a Spekeled patteren.

P.

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In a message dated 12/14/99 6:53:12 PM Central Standard Time,

mcphoto@... writes:

<< I have considered going to Mayo Clinic if

I knew of a doctor who specializes in autoimmune diseases. >>

, at the Mayo Clinic in MN there is a Dr. Lurtha who is an RP

Specialist, I dont know much about him maybe someone can touch on this to

help you out.

P

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, the pain you are in sounds extreme. January 6 is a very long time to

wait for your appointment. Couldn't you call your doctor and tell him of

your pain. Really let him know how you are suffering. Sometimes we have to

go from doctor to doctor to find the one who will understand what we are

going through and more important understand our disease. Sorry that you are

suffering so much, but when your pain is throbbing like you describe it is

important to get some help. Let us know how you are doing. Ronnie

In a message dated 12/14/1999 4:52:39 PM Pacific Standard Time,

mcphoto@... writes:

<< Does anyone in the group know what helps jaw pain? Has anyone ever tried

heat or will that cause more inflammation. I am in such pain right now in

my glands below my ears and in the back of my neck, my nose is throbbing and

I also have pain in my jaw. I am about ready to scream and I am not

scheduled to see the doctor until January 6th. Obviously 5mg of Prednisone

doesn't do a darn thing. My doctor is so fearful of putting me on a larger

dose of this medication. So in the meantime I suffer.

He also prescribed darvocett which doesn't even dull the pain.

I took Plaquenil for awhile, but it didn't seem to help me. Right now I am

on Azathioprine 50mg. I also have a constant rash on both sides of my nose

which I am very concerned about. I have considered going to Mayo Clinic if

I knew of a doctor who specializes in autoimmune diseases. I am very

disheartened with the whole thing.

I haven't been on line in awhile so belated happy birthday to anyone in the

group who recently celebrated their birthday.

Wish we could find a cure for this disease. The pain is starting to wear

very thin.

Ederegge

E-mail mcphoto@...

>>

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In a message dated 12/14/1999 11:10:07 PM Eastern Standard Time,

Ronniegrl@... writes:

<< bviously 5mg of Prednisone >>

Hi---- I agree...Pete is on 40mg to stop the flare and tonight he is 95%

better already.. Prednisone is a powerful med that has some serious

side-effects that have to be monitored closely. But i'll tell you nothing

else quite does the trick.And to stop permanent damage it is worth it...Get

the help you need like someone said sometimes you have to go to a couple of

docs before you find the right one..Hope and pray you feel better Janet

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Does anyone in the group know what helps jaw pain? Has anyone ever tried

heat or will that cause more inflammation. I am in such pain right now in

my glands below my ears and in the back of my neck, my nose is throbbing and

I also have pain in my jaw. I am about ready to scream and I am not

scheduled to see the doctor until January 6th. Obviously 5mg of Prednisone

doesn't do a darn thing. My doctor is so fearful of putting me on a larger

dose of this medication. So in the meantime I suffer.

He also prescribed darvocett which doesn't even dull the pain.

I took Plaquenil for awhile, but it didn't seem to help me. Right now I am

on Azathioprine 50mg. I also have a constant rash on both sides of my nose

which I am very concerned about. I have considered going to Mayo Clinic if

I knew of a doctor who specializes in autoimmune diseases. I am very

disheartened with the whole thing.

I haven't been on line in awhile so belated happy birthday to anyone in the

group who recently celebrated their birthday.

Wish we could find a cure for this disease. The pain is starting to wear

very thin.

Ederegge

E-mail mcphoto@...

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,

I'm so sorry you're going through such pain right now and maybe even

needless pain. You do realize that your letter states what you need to do

and you already know what that is. Change doctors as fast as you can find a

new one and a good one. Do you think your doc would be on 5 mg. of Pred if

he were suffering like you are? I think not. You have a lot going on right

now and it sounds like it could be more than just RP too. Where do

you live again? Maybe someone in our group is in your area and can help you

find a good doctor or someone can recommend a good doc at the Mayo Clinic.

Please don't wait. You need immediate help with this and you need in now.

Know you are in my prayers and please let us know when you find a new doc.

Please don't wait. Keep in touch with us if you can .

>>>>>>>>>>>>>>>>>>>>>>

Does anyone in the group know what helps jaw pain? Has anyone ever tried

heat or will that cause more inflammation. I am in such pain right now in

my glands below my ears and in the back of my neck, my nose is throbbing and

I also have pain in my jaw. I am about ready to scream and I am not

scheduled to see the doctor until January 6th. Obviously 5mg of Prednisone

doesn't do a darn thing. My doctor is so fearful of putting me on a larger

dose of this medication. So in the meantime I suffer.

He also prescribed darvocett which doesn't even dull the pain.

I took Plaquenil for awhile, but it didn't seem to help me. Right now I am

on Azathioprine 50mg. I also have a constant rash on both sides of my nose

which I am very concerned about. I have considered going to Mayo Clinic if

I knew of a doctor who specializes in autoimmune diseases. I am very

disheartened with the whole thing.

I haven't been on line in awhile so belated happy birthday to anyone in the

group who recently celebrated their birthday.

Wish we could find a cure for this disease. The pain is starting to wear

very thin.

Ederegge

E-mail mcphoto@...

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