Doris, burning hands, face, eyes.

[Guest guest]

Doris, the burning sensation in your hands may be unrelated to the burning

eyes. They might both be RP but they may not require the same treatment.

You are going to see a opthamologist. Hopefully it is one who has other

patients with vasculitis -- at least with Lupus -- so he understands

connective tissue problems in relation to the eye. Be sure he knows that

research shows that collagen II is thought to be the component of body

tissues that RP attacks...not just cartilege.

I posted some research about Collagen II and RP a couple of weeks ago. I

still have it on my HD. If you want me to post it to you, let me know. The

posting included a short definition of RP for doctors who are unfamiliar with

it.

My own Rheumy referred me to a neurologist for suspected peripheral

neuropathy with tingling and burning pain in feet/ hands. Mostly feet.

Discuss this possibility with your primary doctor.

I don't know what there is in the nervous system that can be affected by RP

-- if there is any collagen II there or in the myelin sheath on the nerves.

Some research I have read indicates there IS collagen II in the tissue that

makes up blood vessels.

If blood vessels that feed nerves -- large ones or the " small fiber " variety

-- should become inflammed enough to scar over and stop feeding the nerve

tissue I don't know if new small vessels will develop. You need to talk to

a neurologist about that.

A neurologist will give a test called an EMG to determine if you have

neuropathy of the main nerves. If it comes out negative that does not mean

you don't have small fiber neuropathy. The former needs immediate attention

and may indicate you have a more widespread flare underway than suspected.

The later is more in the catgory of " just a nuisance " but it also will

respond to certain medications. (I take 75 MG of Pamelor for mine.)\

If your face is tingly/burning you should ask about the nerve that controls

facial muscles. There is one on each side that comes down from the brain

through the middle ear and inflammation of the middle ear can affect tha.

The nerve is in the same boney channel that carries nerve VIII that controls

vestibular function. If you have every had vertigo it could indicate that

something is going on in the area of those two nerves. However, you do not

need vertigo to suspect that. One nerve can be affected while the other is

not per some research I have seen. Sometimes only one side is affected.

Sometimes it will cause facial palsy (drooping muscles). RP is not the only

vasculitis that can involve that nerve. Wegner's and Polyangiitis

(polyarteritis) can affect it also and cause the same symptoms.

An MRI of the brain (with dye) may, may not show small lesions caused by

blood vessels affected by vasculitis it there are not enough cuts taken. If

your doctor orders an MRI and wants to see if the nerves to the face are

affected he may need to include very small slices of the side views that show

the middle ear, with dye. I had that MRI but there were not enough slices

and the otoneurologist was unable to see if that nerve had any lesions near

it. She is certain that if there had been more slices some lesions would

have shown up because there were 35 points around my brain that had lesions

typical of vasculitis. That made her confident there were mare that did not

show.

If your doctor does not understand how RP could be causing your facial

muscles to " burn " suggest that he look for problems with the facial nerves

and that he also look for a second vasculitis that may be causing it. I

mentioned some of the blood tests for that a couple of days ago.

H.