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Yep, noticed the other “Dr. F”'s name in the UCLA roster and wondered if he was the same one you had seen.
From what you've said, my best bet is to find a rheumy who isn't afraid to work with me and let me call some of the shots based on his assessment of the research I find to the extent that it's valid and isn't going to hurt me. If I asked my primary to do that, he'd laugh and walk out the door. I think he's one of those guys who treats the labs pretty much exclusively… bright guy really, but can be a bit rigid. Gotta find the right one here in LA. I'll figure it out. The sicky will abide.
Thanks, Steve.
If someone is aware of an AP Doc alternative to the Riverside clinic in the Los Angeles area, would you please PM the info to me? If you have more than one that would be great.
Thanks.
Rick
Hi there,
I have been following your thread and really want to wish you the very best in finding an AP doc that you feel good about so you can get going with treatment.
I saw Dr. F in Riverside about a month ago and was really impressed with him, and with the entire clinic. I think most of the stuff posted on his website is from 2000, which means he has treated a lot more Scl in the last decade. Many people on this board see him, and have had good results I believe. I am happy to have him as my rheumy, although it looks like in my case the LLMD is going to be key to healing.
He told me (and maybe this has to do with my age and gender, I don't know) that if I were to develop Scl he could give me about 90% odds that I would not get worse if I started AP, based on what he had seen in his practice. And I do have severe esophageal involvement, that is my presenting symptom (of whatever I have).
Best wishes to you, and if you find a really great AP doc in LA let us know… always good to have the sense that there are a lot of great folks out there willing to help. (Helps me sleep better at night!)
Warmly,
Andrea[user=2703]RickinCA[/user] wrote:
If someone is aware of an AP Doc alternative to the Riverside clinic in the Los Angeles area, would you please PM the info to me? If you have more than one that would be great.
Hi Rick,
I think I just saw an email come in from the apdoctors@roadback.org email from you, requesting the LA physician list? Diana, our ap physician list responder should get back to you today. In case it's not you, I will send you the list in a PM (private message).
Just look top right of this page and click where it will say, “You have 1 new message.”
Peace, Maz
Just wondering if my symptoms are similar with regard to these swelling issues. Mine is mostly in my hands or feet in one place or another (wrist, finger, ball, heel, toe, soles). Rarely, it also will get my tongue on one side or the other (which is really strange). But these seem to be happening almost daily, where I will get a “good day” thrown in somewhere. When it gets really severe (and it does), I have to take some prednisone, usually 5 mg, which puts it at bay within a few hours. Obviously, this is not something I am interested in doing to myself, but if I have to be somewhere to actually speak to someone, it is hard not to take it.
I don't think this is the Reynaud's thing, but I do believe it is related to the collagen perfusion associated with Reynaud's. When it dissipates, my hands seem to go back to normal, but I have noticed that sheen spoken about. There's no noticeable temperature effect so far, no blue or discoloration.
I see the conventional rheumy tomorrow morning at UCLA. Scary.
R
[user=2703]RickinCA[/user] wrote:
I see the conventional rheumy tomorrow morning at UCLA. Scary.
Rick, will keep you in my thoughts for tomorrow…hope it goes well for you and try not to be too disappointed if the UCLA docs are negative about AP. We hear this all the time from others who have gone to these big university hospitals to see the “experts” ….but try to just look at them as “consultants” and that the decision as to what therapy you choose is ultimately completely in your hands. 🙂
All the best for tomorrow!
Peace, Maz
[user=2703]RickinCA[/user] wrote:
Just wondering if my symptoms are similar with regard to these swelling issues. Mine is mostly in my hands or feet in one place or another (wrist, finger, ball, heel, toe, soles). Rarely, it also will get my tongue on one side or the other (which is really strange). But these seem to be happening almost daily, where I will get a “good day” thrown in somewhere. When it gets really severe (and it does), I have to take some prednisone, usually 5 mg, which puts it at bay within a few hours. Obviously, this is not something I am interested in doing to myself, but if I have to be somewhere to actually speak to someone, it is hard not to take it.
I don't think this is the Reynaud's thing, but I do believe it is related to the collagen perfusion associated with Reynaud's. When it dissipates, my hands seem to go back to normal, but I have noticed that sheen spoken about. There's no noticeable temperature effect so far, no blue or discoloration.
I see the conventional rheumy tomorrow morning at UCLA. Scary.
R
My guess, Rick, would be you have hypercoagulation (thick, sticky, blood) common with SD and Lyme. With SD your vessels become lined with collagen and then your blood becomes like pudding, hence the Raynaud's and circulation problems. It is serious and puts you at a higher risk for stroke so efforts to thin your blood is pretty important. Rather than take Heparin to thin my blood I took systemic enzymes and frequent use of my infrared sauna which made all the difference. I've found most doctors don't even know to test for this so, once again, you may have to lead your doctor. :doh:
Take care…..kim
[user=40]Kim[/user] wrote:
My guess, Rick, would be you have hypercoagulation (thick, sticky, blood) common with SD and Lyme. With SD your vessels become lined with collagen and then your blood becomes like pudding, hence the Raynaud's and circulation problems. It is serious and puts you at a higher risk for stroke so efforts to thin your blood is pretty important. Rather than take Heparin to thin my blood I took systemic enzymes and frequent use of my infrared sauna which made all the difference. I've found most doctors don't even know to test for this so, once again, you may have to lead your doctor. :doh:
Take care…..kim
One of my doctors suggested an aspirin a day (low dose) to thin my blood.
So that's the true mechanism at work, hypercoagulation? First time I've heard that. I had been taking an aspirin a day prior to all of this to keep my blood thin, but stopped because we thought the swellings could be some form of angioedema related to aspirin or salicylate allergy. In fact, I really believe it was coincidental to the sclero symptoms and that I had two separate edemas going on. Definitely need to get the blood thinner decided upon. I guess the best one can hope for when this thing strikes is a “mild” form. I think that qualifies for the oxymoron of the month.
Off to see the wizard…
Just a quick note to let you know that I'm sure a lot of us are thinking of you today. Let us know how your appt went when you have a moment, ok? Hang in there!!
Melinda
Had my UCLA appointment yesterday morning, 8AM(!) That's when I usually go to bed. Saw Dr. Altman. Extremely professional and courteous. Dug in deep to get all the insight he could from me and at the end of the appt when he made his dictation, I was amazed at his recall of what had been discussed for the prior hour. He was not all that impressed by the Scl70 and remarked that it was borderline at best. That isn't to say he isn't considering it and keeping it in the mix, he just didn't seem to be thrown in a single direction because of it. Well, I'm sort of like Maria's thought process, in that, what more do you need, coupled with my symptoms? I showed him pictures I've been taking of my hands and feet. From all the lit I have read, that nasty little Scl-70 ab with the right symptoms indicates a strong favor of SD. He checked out my cuticles, skin, etc. Did an RA exam. I don't know what rheumys usually do, this was my first trip to see one.
Mainly he ordered another panel of blood tests, calling it a fishing expedition. I left feeling (and if ever the term appied) cautiously optimistic. Just having a little of the weight lifted is making me feel at least closer to “normal” than I have in weeks. I'm not sure which is worse, the problem or the stress that I feel.
Thanks for the support and valuable info.
Rick,
If they're not sure of your diagnosis, they'll toss you into the undifferentiated mixed connective tissue group. My husband started with a possible scleroderma diagnosis from one rheumie, then the UCLA expert and Dr. F didn't think it was clearly scleroderma so he ended up with the undifferentiated mixed connective tissue diagnosis for a while until his condition became more full blown and then they went with dermatomyositis.
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