Re: [Rpolychondritis susan in va

[Guest guest]

Hi

Yes I get knots behind my ears, the dr. told me it was lymph nodes around the ear. And it sometimes would happen when you were either flaring or getting ready to flare.

As for knots on the legs, where are you speaking of, if its in the fatty area of the leg it could be lymphonmas, or fatty tumors, which are harmless. if its in the joint area then it could be crystals like from arthitis, or bone spurs. i personnaly get the fatty tumors and they are pretty common i think

as for the stiff ears mine are more floppy and falling forward the typical RP ears, but they are very sensitive most of the time. like hands off sensitive.

hope this helps

dawn

Woods wrote:

Hi All,

I have some "general questions that I am asking both the foundation group and the support group because I want as many answers as possible. I would appreciate anyone with any knowledge of these questions to please send in their input.

Question no. 1: Does anyone here get knots behind their ears and on their necks and has your doctor said it is a flare?

Question no 2: Does anyone here get knots on their legs and if so, what has your doctor said it could be/is??

Question no. 3: Are your ears stiff? I mean, if you are not flaring and someone or something bends/hits your ear somewhat, is it very painful? If so, is this something that has to be lived with because of previous flares making your ears like this? I hope that question makes sense. LOL I've heard of the "floppy" ear with RP but not this "stiffness" that comes with our disease and I was testing everyone in my families ears tonight, and everyone's ears are much more pliable and flexible than mine. Mine are some what stiff and unbendable. Anyone notice this? Anyone done an ear test on their family members? LOL

OK, I hope you don't think me totally nuts now, but I would appreciate any input to all or any of the above questions.

Thank you in advance,

W

If God brings you to it-He will bring you through it.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU