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Rheumatologist Update


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#1 amberjolie

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Posted 03 November 2011 - 08:23 PM

I saw the rheumatologist on Monday. It was kind of disappointing. He mentioned that my ANA was 1:640 and nucleolar, and the ENA panel was negative. This didn't surprise me, since this is always how my bloodwork comes out.

He said he was very surprised that someone could have ulcers without Raynaud's. I found that strange, though, because I did tell him that my fingers get cold easily. Maybe he means that with ulcers he would expect to see very distinct Raynaud's. My hands were warm when he felt them, and when they get cold they don't change much in colour. Sometimes my fingertips go whitish, but never bluish.

Anyways, he wants to send me to my husband's rheumatologist after all, because he's a specialist in vasculitis, and he feels that's what's involved. I asked something about whether it could be caused by scleroderma, and he said that I have some symptoms that are scleroderma-like, and some that aren't.

But this time he said my husband's specialist was intrigued by someone with ulcers and no Raynaud's (although he didn't know it was me at the time). So perhaps now that I've become a mystery, he may want to see me. :rolleyes:

He mentioned I had the E, S, and T parts of CREST, but not the C or the R. I always thought you didn't need all of them to have CREST. Also, I would have thought sclerodactyly (even though mine would be considered mild) would be pretty specific to scleroderma. Or are there other autoimmune conditions that can have that?

He also had no idea why I now have veins showing in my forehead. Asked if I've lost weight, which I haven't. And that was that.

So I guess I'm now just waiting to get a call from the other rheumatologist so I can see him in probably six months. Oh well.

#2 Joelf

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Posted 04 November 2011 - 08:22 AM

Hi Amberjolie,

Thanks for giving us an update, although I'm sorry that your appointment with the rheumatologist wasn't a bit more productive.

Although I have been diagnosed with Limited Sclero (aka CREST) I actually only have the "R" of CREST and thankfully haven't (so far!) had any of the other C, E, S or T (nor do I want them! ;) ^_^ ) I think that because there is so much variation in the symptoms that people experience with Scleroderma it is very difficult for even a Scleroderma expert to be absolutely sure when making a diagnosis. I've included a link to other Scleroderma-like diseases and also another link to Biomarkers of vascular disease in Scleroderma which I hope you'll find interesting and helpful.

I do hope you soon get another appointment with the other rheumatologist and don't have to wait too long before you see him.

Kind regards,

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#3 debonair susie

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Posted 04 November 2011 - 10:30 AM

Hi amberjoile,

We really ARE like snowflakes, aren't we?! So different are our symptoms from one another.

I have the "REST" of CREST, very grateful I don't have the calcinosis (knock on wood).

I hope that they can better define a diagnosis for you. In the meantime, I'm sending over lots of :emoticon-hug: s your way!
Special Hugs,

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#4 Snowbird

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Posted 04 November 2011 - 03:32 PM

Hi Amberjolie

Sorry to hear your appointment didn't go as well as you had hoped.

I understood you only need 2 of the letters in CREST. Hopefully you can manage the symptoms since that's important no matter what.

Now we'll have to wait and see what your husband's rheumatologist has to say about all this after all......when you get your appointment, that is...good luck.
Sending good wishes your way!

#5 Amanda Thorpe

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Posted 04 November 2011 - 06:10 PM

Hello Ambejoile

Yep, as per our own site: It takes only two of the five CREST symptoms for a diagnosis of CREST (either "pure" or "plus") to be made. For example, a patient with Calcinosis and Raynaud's would have CREST (which for precision may also be written as CRest, but it is CREST nonetheless.)

Take care.
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#6 amberjolie

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Posted 04 November 2011 - 09:46 PM

Thanks for the replies and the links!

I find it odd, because I personally don't see the T (I'm not going to try to spell them), but the rheumatologist said he saw some. I agree with the E and S, but I find it strange that he doesn't think I have the R.

I've been getting odd bumps around, and although the ones on my fingers didn't come out as calcinosis (an x-ray was done), I also have one on my knee that I'm going to get x-rayed to see if that's calcinosis.

So I could potentially end up with all the letters (assuming that this is CREST, the doctors of course are still trying to figure it out), but mild in each case. We'll see what the x-ray shows, and what the other rheumatologist says, once I can get in.

#7 judyt

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Posted 04 November 2011 - 10:34 PM

Hi Amberjolie,

It is interesting isn't it how people see different things differently. When I was discussing my symptoms we decided little pimples on my fingers which were quite painful and filled with milky fluid were Calcinosis. I only ever had one hard one which consisted of 3 or 4 tiny pinheads of calcuim on the point of my elbow.

Raynauds I had, very definitely all the colours, no question.

'E' yes couldn't swallow properly or burp - still can't.

Sclerodactyly I was told I had but I don't know if I agree my hands don't look a bit like the ones in the pictures. They are just a bit fat between the second and third joint. I wouldn't call them fat really but in the past my fingers seem to have changed size from day to day. One day my rings would flop around, next day the would be tight - so maybe that is it.

My Telangectasia are all tiny and all except 2 are on my hands. The thing about the 'T's is that if you press them they disappear then appear again when you let go. Some of them are only pinhead size and some are about 1/8" across. I have a couple inside my lower lip.

But what seems to be definitive is the fact that my ANA is 1:2480 and centromere. There has been an opinion expressed that only centromere is definitely Sclero - but then we have our Amanda whose ANA is something else or nothing at all and yet she has Sclero quite definitely so there are apparently almost as many variations as there are people.

It took me almost 40 years to get a diagnosis, and in the end I don't think it has made any difference to the outcome for me. I didn't like not knowing what was going on and I suppose I could have had a worse outcome, but I didn't. The difference is that now so much more is known about this and many other disorders that you will probably get some sort of a diagnosis before too much longer.

In the meantime all you can do is be aware of what is happening, Follow the tips and recommendations you will find on this site, and look after yourself as well as you know how.

I do hope you get some satisfaction before long and in the meantime have :balloons: and :emoticon-hug:
Best wishes from the upside down sode of the world
JudyT

#8 amberjolie

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Posted 05 November 2011 - 08:38 AM

What's really odd is that if I understand what telangectasia is, I actually had quite a few of these over the years on my legs, hands, and I think even one on my face, since I was a kid. Then they disappeared when I became an adult, well before the autoimmune issues started or came out, as the case may be. And like I said, the rheumatologist says he sees a few now (I think under my tongue and/or on my chest), but I can't tell where he's seeing them. Strange. But then, all autoimmune disorders like to throw a few curveballs, don't they?

#9 Snowbird

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Posted 05 November 2011 - 02:26 PM

Hi Amberjolie

If you have Raynauds, you really can't miss it, it's so distinctive. Before mine presented itself, I couldn't seem to warm my hands or feet and that went on for an eternity. Thinking back now though, the closer the Raynauds was to 'showing itself' the harder it was for me to warm up sometimes. At times I even thought they my hands were a little 'yellowish' but that wasn't enough to say "yep something is definitely going on here on for sure" although I kinda thought something was going on. It just did not seem 100% right. Shortly after that, my Raynauds showed itself and I was full-fledged colours. Maybe you could just be at that beginning stage too like I was? Of course, you may never change from what you have now either the way this disease works, ah who knows?
Sending good wishes your way!

#10 amberjolie

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Posted 05 November 2011 - 07:06 PM

Hi Snowbird,

I'm wondering if the rheumatologist is thinking it's surprising to see the ulcers without full-fledged multi-coloured Raynaud's, and I can see his point. I don't seem to need cold weather to start seeing ulcers. And last winter, I didn't have any. So they do seem to be unrelated to my hands getting cold.

#11 Amanda Thorpe

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Posted 06 November 2011 - 02:26 PM

Hello Amberjoile

I have foot and now also leg ulcers, I have been told they are not ischemic but as a result of the skin breaking down. How that actually works I don't know but I wasn't surprised to see the ulcers creep up my legs. I had noticed that the skin there was becoming fragile and would open up and bleed if I just scratched it slightly.

I have Raynaud's but very mild, no red or blue just white and cold, oh yes and cramp, particularly in my feet as a result of Raynaud's.

I'll be so happy when you get a firm diagnosis...bizarre thing to say eh?

Take care.
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#12 amberjolie

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Posted 06 November 2011 - 02:41 PM

Hi Amanda,

FInger ulcers are painful enough as it is - I can't imagine leg and foot ulcers! You poor thing!

It isn't bizarre at all to hope for a diagnosis. I'll be happy, too! Technically I do have one diagnosis (well, actually, two - Sjogren's and Hashimoto's). It's just that I'm convinced that some of the symptoms I have must be scleroderma. Also, as I think I've said this in another post, Sjogren's isn't often acknowledged as being serious (even though it can be), while if I had another diagnosis to validate my other symptoms, people might realize why I'm not functioning as well as I used to.

My previous rheumatologist said I was ruminating over my health (that's the one I don't see anymore), and some days, it sure feels like that's what I'm doing, but I can't see how it's wrong to want a definitive name to what I'm dealing with.

Anyways, thanks again for all the replies!