This is my life changing story

[ThePowerCouple]

I agree with the advice of getting a good Wegs doc. I don't know if they have Rhemy's in the Tampa, but there is suppose to be a good one in Naples. I will find out/put his name here for you if you want. I do have a great ENT in Naples Dr. David Greene, he is very up-to-date with wegs. Dr. Greene was was Cleveland Clinic when they were in Naples. I see him when I am in Naples during the winter, he has helped me a lot. I go to Cleveland Clinic in Cleveland when I am home for my main course of treatment. I have Dr. Greene's number if you want it and he most likely knows the right rheumy in the area.

Mary

May we have the name of the rheumatologist in Naples? We found Dr. Greene's phone number on the internet. We thank you for forwarding his name.

[jakekell]

May we have the name of the rheumatologist in Naples? We found Dr. Greene's phone number on the internet. We thank you for forwarding his name.

Dr. Alper, Jeffrey
239-262-6550

Dr. Alper and Greene are with the NCH Hospital group so the information exchanges very well.

Good luck hope things get better soon,

Mary

[ThePowerCouple]

Dr. Alper, Jeffrey
239-262-6550

Dr. Alper and Greene are with the NCH Hospital group so the information exchanges very well.

Good luck hope things get better soon,

Mary

We thank you for forwarding the name and phone number of the rheumatologist. We will give him a call.

[jakekell]

I hope they get things under control soon. I really liked Dr. Greene he is on top of everything that was going on with my sinus, breathing, ears, etc. He told my husband and I at the first visit that he would give me all the information I need to stay in better control. I was surprised that he did just that, he takes everything seriously. Dr. Greene handed my a copy of my scan along with a letter for my rhemy and for my ENT here in MI. The letter stated right where my condition was when I left for home, hope you have the same results.

[Lilly]

Hi PowerCouple, I hope you are getting the best of care at this point. I love the way you document your events and meds, etc. I do the same thing. Sometimes it really helps if you have to see a new specialist, or if you just have to try to remember what meds you took when. Ive had wegeners for 25yrs, and I still keep a basic journal of information. My question is, at any point, did you ever have pain in the bottom of both feet? The only way I can explain it is it feels like someone took a hammer, and beat on the bottom of my feet, and they are totally bruised. I also have lumps on the inside of both feet, that I can feel, but they move around. They are inside, so I see no redness, inflammation, or heat. But, I use a cane when I'm up and around because I will get a bit unsteady sometimes, and the LAST thing I need is a broken hip from falling! Also, the bottom of my feet are sometimes tingly when sitting and have them up. If I am standing in one place for a minute or two, they feel like they are very tingly, like they are falling asleep. Thank you for any ideas you have. Hope all is well with you! Lilly

[Alysia]

Hi PowerCouple, I hope you are getting the best of care at this point. I love the way you document your events and meds, etc. I do the same thing. Sometimes it really helps if you have to see a new specialist, or if you just have to try to remember what meds you took when. Ive had wegeners for 25yrs, and I still keep a basic journal of information. My question is, at any point, did you ever have pain in the bottom of both feet? The only way I can explain it is it feels like someone took a hammer, and beat on the bottom of my feet, and they are totally bruised. I also have lumps on the inside of both feet, that I can feel, but they move around. They are inside, so I see no redness, inflammation, or heat. But, I use a cane when I'm up and around because I will get a bit unsteady sometimes, and the LAST thing I need is a broken hip from falling! Also, the bottom of my feet are sometimes tingly when sitting and have them up. If I am standing in one place for a minute or two, they feel like they are very tingly, like they are falling asleep. Thank you for any ideas you have. Hope all is well with you! Lilly

Dear Lilly. I had those pains in my feet after the acute onset and while being for a while on pred 60mg. I dont know if it was because of wg or pred. The dr. Prescribed for me some soft silicon footholds for the heels. It helped.

[debra]

Lily, hi. Weird as I was just saying my pain for the last almost four years now, stopped at the top of my feet, ankles. Mostly just burning leg pain throughout, and roaming? Worse lying down, which makes sense with the circulation being affected? Well, stupid me for even opening my mouth, cause now its in my feet as well... I'm sitting here typing this, and my feet are now as sore as my legs. Bummer... The feeling sometimes moves to tricking? Is that a word? Ya, I guess if you spell it right! Tricking! So sorry.. Also, feels like falling asleep? But not quite... This has been happening to my arms and shoulders now. Much worse when lying down. Roaming. Now hands, at times... Lily I'm not on meds, so mine wouldn't be a pred side effect. I'm on my own natural pred. Alysia, can fill you in there! Hi, Alysia my sister! Lily, I hope this can help a little.... Good luck! Debra.

[debra]

Pricking, Lily, not trickling!!!!! Two times it changed my words! I had to program the word prick, into my phone! Sorry, Deb.

[debra]

Oh no!!!!!!!!!!! Please forgive me!!!! Why me??? No, Pricking!!!!!! I should have just used a different word! I'm so sorry you guys. Maybe Andrew can take this away? Oh boy..... Deb.

[Birdie]

Dear Lilly. I had those pains in my feet after the acute onset and while being for a while on pred 60mg. I dont know if it was because of wg or pred. The dr. Prescribed for me some soft silicon footholds for the heels. It helped.

I got compression stockings, hurt like crazy putting them on but helped greatly with the swelling and pain. Even let me get shoes on my feet when half an hour before, the feet were actually bigger than the shoes.