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I don't think that I had thyroid tests done. Regarding Avascular Necrosis, this is something that my ortho surgeon checked and continues to check. I had a full body bone scan and nothing turned up (fortunately!). Regarding the Pityriasis Lichnoides Chronica, they are small scaly red bumps that turn a light brown colour and dye back, but more come. I can have times when I am less bothered by it. It can be itchy, but I try to keep it hydrated so that it doesn't bother me so much. Regarding the rash on my neck, I would say that it could be sclerosis. it feels like paper, but it's not really a different colour. But my neck is that only place that I have this paper like skin. I'd be bummed to find out that I had yet another skin disorder and to not find out that there is a reason to why my joints and muscles hurt so bad. I feel that my issues are more than skin deep - haha! Seriously, though, I think that my SCFE has been a red herring. Even I had put all my eggs in one basket and hoped that my pain could be sorted by fixing my hips. 3rd of November can't come fast enough for me. I will add a few other things that I think might be relevant for the rheumatologist and hopefully he'll sit up and listen. Fingers crossed they can identify exactly what is bothering me, and that given the ANA result, they will hopefully order full bloods to identify the offending antibodies.

Thanks once again. And you can bet on me coming back and letting you know what the result is. Take care!
I keep having to re-read way back because I haven't mentioned some of the issues you've had that rang a bell with me. I keep wondering about how one of the docs worded your lab results when she mentioned "centromere pattern". Did she just mean that your anti-centromere antibody was positive? I know mine was positive and, the way I read it, states that my ANA pattern is both speckled and homogenous. I could be reading it all wrong, though - this would not be a first!

I've been wanting to ask you (and anyone else who might be willing to share) a few things about symptoms. My hair loss has been really confusing. I've been losing very decent sized clumps (mostly diffuse thinning) in the shower now for almost three years, so to say that it's thinned is an understatement. Now, my hairline has receded a good amount and it is the most thin in the area of my bangs. What is left snaps and rips and often looks like I stuck my finger in a light socket. I have these weird scalp sensations at times. I have never had any sores, only some visible redness - but at times, it is so sensitive and painful that I don't even want to touch it. It just feels sore, for lack of a better word. Really sore. Sometimes it's a burning feeling, sometimes it's itchy. The areas where I feel soreness are the more affected by loss and you can see lots of scalp. I'm going to see a dermatologist in early Feb and will hopefully have a biopsy done to see if we can figure out what we're dealing with. I fear that I have scarring because there are areas that have far, far less follicles than others and lots of visible scalp in between. I worry that even steroid injections might not be helpful. I'm confused about the types of hair loss, though - I don't know if we can have scarring if there are never any visible lesions or skin compromise - I assume we can under the skin I'm not sure if that's limited only to discoid Lupus, etc. As far as our lab results go, I didn't think anything but SLE was on the list of possibilities, but maybe that doesn't rule out of the possibility of others as well? I think I'm confusing myself now and I'm on information overload.

I had some labs drawn yesterday and the biggest reason for ordering them was to make sure my kidneys are ok. I was thrilled to hear that the results were reassuring and the doctor was pleased. Liver stuff was all ok, despite being on three hepatotoxic meds plus all kinds of supplements. So grateful for that good news.

Have you had many issues with photosensitivity? I've been hit by one realization after the other as to sun exposure related incidents. A couple of them involved what I thought were sunburns on my head, but the amount of exposure didn't warrant them. Immediately after that, I was wiped out and freezing cold, even though I hadn't been in the sun long and only tanned without any visible "pinkage" or redness. I believe I was also achy, although I really have no joint issues. I have soft tissue soreness often, but only when prodded. ;) I had also experienced some symptoms on my face that I described to the rheumatologist, wondering if that might have been butterfly rash, and he stated that it sounds more like Lupus-related angioedema. In the last few months, I was exhibiting at least some type of rash consistently when I was exposed, but didn't think much of it until these possible diagnoses surfaced.

I know that you mentioned oral ulcers, but do you ever have any in your nose? I have this one recurring one that comes and goes and it's been there for at least four years, when the downhill slide of my health first began. It's right on the rim of my nostril and it looks and feels like an area that had been dry and just split - except for the skin there was never dry. It stings like crazy and when my drippy dog nose runs, it hurts like crazy to dry it even with the softest tissue. It has just been one of my many weirdnesses added to the list. :)

Okay, that's enough babbling for now - just wondering if any of these issues sound familiar. I hope you are feeling well and that today is a good day for you!
[QUOTE=HeIsBigger;5339633]I keep having to re-read way back because I haven't mentioned some of the issues you've had that rang a bell with me. I keep wondering about how one of the docs worded your lab results when she mentioned "centromere pattern". Did she just mean that your anti-centromere antibody was positive? I know mine was positive and, the way I read it, states that my ANA pattern is both speckled and homogenous. I could be reading it all wrong, though - this would not be a first!

I've been wanting to ask you (and anyone else who might be willing to share) a few things about symptoms. My hair loss has been really confusing. I've been losing very decent sized clumps (mostly diffuse thinning) in the shower now for almost three years, so to say that it's thinned is an understatement. Now, my hairline has receded a good amount and it is the most thin in the area of my bangs. What is left snaps and rips and often looks like I stuck my finger in a light socket. I have these weird scalp sensations at times. I have never had any sores, only some visible redness - but at times, it is so sensitive and painful that I don't even want to touch it. It just feels sore, for lack of a better word. Really sore. Sometimes it's a burning feeling, sometimes it's itchy. The areas where I feel soreness are the more affected by loss and you can see lots of scalp. I'm going to see a dermatologist in early Feb and will hopefully have a biopsy done to see if we can figure out what we're dealing with. I fear that I have scarring because there are areas that have far, far less follicles than others and lots of visible scalp in between. I worry that even steroid injections might not be helpful. I'm confused about the types of hair loss, though - I don't know if we can have scarring if there are never any visible lesions or skin compromise - I assume we can under the skin I'm not sure if that's limited only to discoid Lupus, etc. As far as our lab results go, I didn't think anything but SLE was on the list of possibilities, but maybe that doesn't rule out of the possibility of others as well? I think I'm confusing myself now and I'm on information overload.

I had some labs drawn yesterday and the biggest reason for ordering them was to make sure my kidneys are ok. I was thrilled to hear that the results were reassuring and the doctor was pleased. Liver stuff was all ok, despite being on three hepatotoxic meds plus all kinds of supplements. So grateful for that good news.

Have you had many issues with photosensitivity? I've been hit by one realization after the other as to sun exposure related incidents. A couple of them involved what I thought were sunburns on my head, but the amount of exposure didn't warrant them. Immediately after that, I was wiped out and freezing cold, even though I hadn't been in the sun long and only tanned without any visible "pinkage" or redness. I believe I was also achy, although I really have no joint issues. I have soft tissue soreness often, but only when prodded. ;) I had also experienced some symptoms on my face that I described to the rheumatologist, wondering if that might have been butterfly rash, and he stated that it sounds more like Lupus-related angioedema. In the last few months, I was exhibiting at least some type of rash consistently when I was exposed, but didn't think much of it until these possible diagnoses surfaced.

I know that you mentioned oral ulcers, but do you ever have any in your nose? I have this one recurring one that comes and goes and it's been there for at least four years, when the downhill slide of my health first began. It's right on the rim of my nostril and it looks and feels like an area that had been dry and just split - except for the skin there was never dry. It stings like crazy and when my drippy dog nose runs, it hurts like crazy to dry it even with the softest tissue. It has just been one of my many weirdnesses added to the list. :)

Okay, that's enough babbling for now - just wondering if any of these issues sound familiar. I hope you are feeling well and that today is a good day for you![/QUOTE]

1. No ulcers in my nose (yet!)
2. I have always thought that my skin reacted normally to sun (BURN) and sore for ages. My face always has a pinkish tinge across my nose and on both sides of my nose No where else to I have this. When I say always, it's more apparent when I'm warm.
3. I asked my rheum whether I tested my ANA was centromere antibody positive or just centromere pattern. He said PATTERN. I have recently read that they ACA is a different test altogether and that ANA centromere is a pattern. Perhaps someone else here can shed some light as to whether or not this is true.
4. I have had problems with hair breakage, but it settled down. I now have reasonably healthy (albeit I have dyed it because otherwise grey) hair. I suppose it's one thing I can be positive about.

I'm so glad you had at least some positive results (liver and kidneys). I think if memory serves me right you are having an appointment this week with your rheum? I wish you all the best and look forward to hearing your news here.

Hugs,
Stacey





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