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Centromere Antibodies?


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#1 msjess

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Posted 05 May 2013 - 12:05 PM

Hi folks, I hope it is ok that I joined, as I have a few questions about diagnosis. Currently, my only diagnoses are hashimoto's thyroiditis and fibromyalgia. A year ago, my GI doctor ran ANA testing on me, which turned out positive 1:640, and I was sent to a rheumatologist for evaluation and more testing. His tests showed extremely high anti-chromatin antibodies and just over the range for centromere antibodies, along with ss-DNA antibodies. At that time, I was unaware what the centromere antibodies were, and hadn't thought much about them for the past year, but as I read more and more I wonder if centromere antibodies are found in people who don't have CREST. The rheumatologist said I probably had drug induced lupus at some point, and that was the reason for the high chromatin antibodies, however he never really addressed the centromere antibodies.

 

My symptoms to date:

 

A long history, going back to childhood, of really cold hands and feet... sometimes they turn colors or get really hot after any prolonged exposure to cold. I'd say my nose, ears and face are somewhat affected by this sensation too. I figured I had Raynaud's phenomenon but didn't know much about it... later I attributed it to my hypothyroid.

 

Other miscellaneous symptoms, which haven't been attributed to my thyroid, include gastritis/duodenitis and IBS pains; difficulty breathing at times, typically seasonally in spring and summer, with last summer topping off with chest pleuritic pain that was never explained; extremely dry hands and feet; peripheral neuropathy of unknown reason; orthostatic hypotension episodes that sometimes lead to fainting. I also have had a year's worth of unexplained "adult acne" and random red spots showing up all over my body, including face, lips, arms, hands, chest.

 

I guess I am now wondering if I could possibly have CREST, due to the centromere antibodies, the GI problems, lung issues and possibly red spots on body? I haven't seen any sclerodactyl or calcium deposits at all. Is this something I should discuss with my primary care?

 

Thank you for reading and for any advice.



#2 Shelley Ensz

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Posted 06 May 2013 - 10:39 AM

Hi Msjess,

 

Welcome to Sclero Forums. According to the Mayo Clinic, Centromere Antibodies, IgG, Serum, centromere antibodies can occur in scleroderma, lupus, rheumatoid arthritis, and primary biliary cirrhosis. They are not very common in healthy people, however they can turn positive a few years before clinical signs of scleroderma.

 

It would be a good idea to discuss things with your primary care doctor. You can download and print your own copies of our What is Scleroderma? brochure, which includes a handy systemic scleroderma symptom checklist.

 

Primary care doctors can help by diagnosing and assessing Raynaud's and ruling out other causes of your symptoms. Allergies and acne wouldn't be caused by these sorts of illnesses, but the other things you mentioned might be. Certainly things like dry skin, allergies, acne, and IBS-type pains are common in normal, healthy people. But they might be able to help figure out the cause of your peripheral neuropathy, or rule some things out. For example, the neuropathy might be caused by Raynaud's or by carpal tunnel syndrome, either or both of which might point more in the direction of scleroderma. And then, if need be, they might refer you to a scleroderma expert.

 

But, they might find -- just for an example -- that the neuropathy is caused by diabetes, in which case your care would go off in an entirely different direction.  So don't pin your hat on scleroderma.  Keep your mind open to all the possibilities which range from normal issues of basically healthy people, to other illnesses, to arthritis-type diseases like lupus and scleroderma.

 

They  might run a dozen very serious tests, only to prove in the end that you are not seriously ill.  Your centromere antibodies may have even vanished! So please do your best to keep your attitude steady, as even the question of some illnesses can be very challenging to cope with in an emotionally healthy fashion.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 06 May 2013 - 12:03 PM

Hi Msjess,

 

Welcome to these forums!

 

I'm sorry to hear that you've had worrying health symptoms. Unfortunately Scleroderma is a very difficult disease to diagnose, even with specific symptoms, as it does affect everyone differently. Also blood tests, although helpful, are by no means conclusive as it is quite possible to have Scleroderma and yet have negative blood tests and vice versa, as many of our members can testify.

 

As Shelley has advised, I would suggest that you consult your primary care doctor and then he can decide the next course of action for you, depending on the symptoms you're experiencing.

 

Kind regards,


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#4 Shelley Ensz

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Posted 08 May 2013 - 06:16 PM

Hi Msjess,

 

Have you managed to make any progress on this yet, such as making an appointment with your primary care doctor, to discuss your concerns?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 msjess

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Posted 13 May 2013 - 07:27 AM

Thank you all for your responses. I have a doctors appointment set up for this week, but am not sure if I should address this issue. I feel like a hypochondriac sometimes, I have so many complaints about my health.

 

My appointment this week is because I have orthostatic hypotension and sometimes black out upon standing. This month has been worse than others, so I am asking for a referral to a cardiologist. I also have had horrible luck with rheumatologists since my testing last year. The rheumy I first saw was incredibly rude, and I didn't have any better feelings about the second opinion. Both appointments I had to wait 4-6 months to even get in with them, because that specialty is so rare in my area.

 

Since writing initially to you guys, I have noticed some callouses on the palm of my hand, which I am not sure where they came from. Also, I have many many callouses on my feet at the moment. Are extensive callouses (not related to hard physical work) a sign of scleroderma/Crest?

 

I also have an unexplained bump on the outside of my right wrist, which has been there for about 5 months. When I showed the doctor a few months back she said it was probably just a ganglion cyst?

 

Another thing, I have terrible carpal tunnel which first showed up in my mid-20s, and that was back when they first said I had fibromyalgia as well.

 

All of this is just so overwhelming some days, I just deal with the symptoms and don't even bother mentioning them to my primary any more.



#6 msjess

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Posted 13 May 2013 - 07:31 AM

One other thing, I've also this week re-started gluten free diet. Although I didn't test "positive" for celiac antibodies or on the biopsy, I know I felt much better when on gluten free two years ago. And I just noticed there are connections between gluten/celiac and also scleroderma and Hashimoto's. Very interesting.



#7 Joelf

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Posted 13 May 2013 - 12:12 PM

Hi Msjess,

 

I'm sorry that you've had a less than sympathetic response from your rheumatologists'; whether or not they consider that you are actually suffering with Scleroderma, it still does not excuse their rudeness to you, especially as you're obviously anxious and worried. I've included a link to  Orthostatic hypotension and I do hope that your doctor will be able to help and advise you with regard to it.

 

Even though people with Scleroderma would typically have callouses, it does not mean that it's a symptom of Scleroderma, or even that it is caused by a disease process. Callouses can be symptomatic of many other things as well; however, please note that apart from an out of date first aid certificate and a strong desire to tell my medical team how to do their jobs, I have no medical training, so I can't really advise you as to whether or not your symptoms relate to Scleroderma.

 

I've also included a link to our medical page on Gluten Free Diet which I hope you'll find helpful and informative.

 

Kind regards,


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#8 Shelley Ensz

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Posted 13 May 2013 - 12:12 PM

Hi Msjess,

 

Most of us here understand how hard it is to sort out symptoms, as to which ones are possibly related to connective tissue diseases, and which ones are not.  You must bear in mind that I *still* haven't received my Internet Medical Degree even though I ordered it a few weeks ago <sigh> and take it all with a grain of salt.

 

As it happens, there is no relationship between calluses and scleroderma. Calluses can be healed, and go away.  Also, scleroderma does not cause ganglion cysts. They are very common and in olden days, they used to treat them by thumping them with a very heavy book. You might remember your grandparents talking about that?  Thankfully the treatments now are more mericiful.

 

Carpal tunnel can sometimes be caused by scleroderma, but scleroderma would typically be the rarest of the possible causes of carpal tunnel. Interestingly for you, ganglion cysts can cause carpal tunnel. See Causes of Carpal Tunnel by WebMD. And carpal tunnel is also more common in people with fibromyalgia than in the general population. I don't know, couldn't say -- both because I'm not a medical professional of any sort and because this is just the internet, of course -- what is causing the carpal tunnel in your particular case and whether or not it could be related to possible scleroderma for you.

 

Unfortunately, it does take a rheumatologist to diagnose scleroderma. If at some point your primary care doctor feels you have racked up enough specific symptoms of scleroderma, you might want to ask them to refer you to a listed scleroderma expert.  Bear in mind that many specialists become so engrossed in technical aspects of their specialties that they may lose sight of common human courtesies and come off as rude or condescending, etc. But you aren't looking for a new best friend, you are only looking for an apt scientific appraisal of your symptoms and any possible underlying illness that might be tying them together.

 

Working with your primary care doctor to more clearly define some symptoms, and their possible causes, could be helpful.  For example, perhaps they could refer you for vascular lab testing which could prove that you have Raynaud's, rather than having it just be referred to as cold hands and feet, because simply cold hands and feet are not a scleroderma symptom, but Raynaud's is.

 

Also, sorting out the important from the negligible may be of primary importance for you. That is because hypochondriacs can see every single symptom as a sign that they are going to die, immediately. But mentally stable sick people sort things out carefully, as to what symptom is the most troubling, which symptoms need further testing, what deserves mention but is not very important, and things that are simply not important at all. 

 

You can see how a hypochondriac would not make progress even if they did develop a serious illness, because they wouldn't know how to sort things out to develop a reasonable plan of attack. And unfortunately, many doctors lean on a perplexing thought that anybody with three or more symptoms at once, must be a hypochondriac.  I don't know how they come up with that since any disease worth its salt would have more than 3 symptoms!  But the mere thought should be enough to slow most of us down and address things sequentially, and in order of importance.

 

I would suggest that you do *not* save up a dozen things to hit your poor doctor with all at once. Try your very best to eliminate the "noise" from the conversation, "noise" being just regular symptoms or symptoms most likely due to some other illness you already know you have. For example, trying to bolster a scleroderma diagnosis with calluses or cysts just won't work, and the effort itself will probably cause the entire thing to backfire.  So you have been very wise to bring up the topics here, get them discussed in the light of day, and to see if they hold "scleroderma water" or not.

 

But, if you get the Raynaud's nailed down scientifically, and add that to the carpal tunnel and the anti-centromere antibodies and then ask for a referral to a scleroderma expert, then you might have a working plan to at least get evaluated for possible scleroderma by an expert.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 msjess

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Posted 13 May 2013 - 04:45 PM

Thank you all for the advice.

#10 Shelley Ensz

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Posted 13 May 2013 - 08:47 PM

Hi Msjess,

 

I just read over my last message to you, and I am sorry if I sounded so stern. Or bossy, or whatever.  The internet is awful as how we write things, and what it conveys to the reader, can be so different depending on the tone of voice we read it with, or so many other variables. I was saying it kindly, if that's any comfort at all.

 

Please bear in mind that we have to answer not only people's questions on the forums, but also the questions of people who are merely reading the forums.  Some of those people really are dyed in the wool hypochondriacs -- or cyberchondriacs, in this new day and age when most of us have not yet figured out how to sort the wheat from the chaff with the overwhelming amount of medical info available online.  And some of them have scleroderma, or other serious symptoms, but don't know how to navigate the health system when dealing with a complex disease.

 

And some of them are a mix of everything!  Some potentially serioius symptoms of potentially serious diseases but with a bit of cyberchondria thrown in, or just inexperience in working with doctors to get an accurate diagnosis.

 

As it happens, I think you have some potentially serious symptoms and it is concerning to also have anticentromere antibodies along with them.  In your particular case, I do not want your medical care to be disrupted, or steered off course, due to focusing on things that are most likely not related to scleroderma.  That is NOT to say that you should not have asked the questions, rather that you were very wise to raise the questions here and kick them about before faced with discussing things with your doctor.

 

Another issue is, we are taking your word for it that what you have are calluses on your hands. If we are all wrong about that -- which is certainly always possible -- it would definitely be an additional issue for your doctor.  So please never take anything we say as any indication to not bring an item of concern to you up to your doctor.  Just do your best to try to keep the focus on priority items that will help move your medical care forward, and that will help answer the question as to whether or not there is an underlying disease process at work.  That is not in the least bit easy when there is a handful of things going on at once!

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 msjess

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Posted 14 May 2013 - 03:32 PM

It's all good. I understand Shelley.

 

The main concern I have at this time is that ANA and subsequent testing, which showed my anticentromere antibodies at 123 (I dug out the papers today; the range was 0-100), and whether these antibodies show in persons who do not have CREST. If they do, then I am happy to have that mystery resolved and I can worry about my two boys and their health instead of mine, ha. I am just still mystified at the whole ANA/antibodies testing and there are still concerns on my part as to whether I have lupus. Before that testing, I was just fine dealing with my myriad of bizarre health problems as they each appeared, but if some of them are part of a constellation that identifies a definite disease process going on, then I want to be aware of it and be proactive so that I can be around as long as possible. :)

 

Again, thank you for your advice. It is helpful to be able to come here and learn a bit more about this autoimmune illness.



#12 miocean

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Posted 14 May 2013 - 08:42 PM

Ah msjess,

I really feel for you as I have been there and am there again with complications of scleroderma and an overload of information. Prioritizing is a very important thing for me, and time management as well. Otherwise I could spend every waking hour on my illness. If I believed everything I read on the internet I would have died about 7 times by now and years ago.

I just had my autoimmune panels run again and I was certain they would show I had a bunch of diseases besides scleroderma. My ANA was exactly the same as 9 years ago only this time instead of speckled it read 1:180 diffuse. I am just plain old, full blown, diffuse scleroderma with everything that comes along with the package. Who could ask for anything more?

Of course you are worried and concerned, especially with two children. This is the best advice I can give:

1. Document your symptoms with notes that include dates and even photos of things that may change or disappear like the callouses, cyst, spots, etc.
2. Keep copies of all tests, labs, doctor notes, disks in whatever way best works for you. If a doctor says she thinks it is a certain thing, politely ask if there is a definitive test, or if you should see another doctor regarding it, and if so, ask for a referral if you need one.
3. Don't believe everything you read on the internet.


I thought I had carpal tunnel syndrome as well. My initial symptom was waking in the middle of the night with my hands tingling and my arms hurting. As my symptoms worsened with my skin hardening almost immediately I went from doctor to doctor to doctor, initially thinking I picked up a parasite in a foreign country. I put my symptoms into a search engine and scleroderma continued to come up. I had two of the doctors I saw suggest scleroderma but my primary didn't think that was it and not one doctor requested an ANA panel. A neurologist was going to do some labs so I asked her if she could run an ANA and she was great and did. Within a short amount of time I was officially diagnosed, something that is done by symptoms, not the ANA which just confirms it, and off to see a scleroderma specialist.

I wish you the best, I know where you are at and how very frustrating it is. Please continue to return to this great forum to learn and share.

miocean
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#13 msjess

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Posted 02 June 2013 - 12:49 PM

Thank you miocean for your reply. I am going to attempt to post a couple photos of a few "symptoms." I've actually added them to an album on here, at this link.

 

MSJESS Photos

 

I have since noticed bumps, small bumps on my hands, some toward the bottom of my fingernail, and some on the inside of my finger towards the base. My hands and feet lately are insanely itchy, and I do wonder if this is part of a dermatitis that may be new for me. I also seem to get really itchy after sun exposure in general.

 

I've been to my doctor but haven't brought up my concerns again - I really don't want to have to go back to the first rheumatologist I saw last year, as he was just incredibly rude. But, if this keeps up, I will push to have all my ANA test repeated for peace of mind.

 

I really don't know if I should pursue this or the possibility that I have lupus again with the doctors. I'm just overall really frustrated by them all, and their lack of knowledge about autoimmunity.



#14 msjess

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Posted 02 June 2013 - 12:52 PM

Oh, and another thing, I've recently dug up a few photos of my grandmother on my father's side. She had Crohn's disease, and from what I remember it's likely she had either CREST or scleroderma. Her hands became incredibly taut and shiny and she was eventually unable to knit any more. Also, she had many issues with skin thickening and her feet. I will try to add a photo to that album if I can scan it.



#15 Joelf

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Posted 02 June 2013 - 09:56 PM

Hi Msjess,

 

Thanks for submitting your photos.

 

I think that a lot of rheumatologists don't always have the knowledge about autoimmune problems, which is why if possible we do recommend that you consult a Scleroderma specialist., especially as you have had very little help from the first rheumatologist you saw.

 

I've included a link for you to our medical page on Causes of Scleroderma: Genetics which, in view of your grandmother's health problems, I'm hoping you'll find interesting and informative.

 

Kind regards,


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#16 msjess

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Posted 05 June 2013 - 12:42 PM

Thanks everyone. I appreciate the input.

 

I went to my primary care provider two days ago for my itchiness all over, and she put me on 6-days of prednisone. She "thinks" it is due to mold allergy, but also has put through another rheumy referral to another one in my area. (Last time, he wasn't accepting patients so I doubt it'll go through this time either). My former rheumy just sent out mail saying he's leaving the area, too, so even if I wanted to go back to him, I couldn't. My primary won't do any of the ANA testing on me either, which is what I had asked about before she said she'd do the referral. I really want to get a second round of testing done, to either validate the previous testing or give me some peace of mind... I don't know, it just really bugs me that I'm kind of stuck in some limbo here.

 

I really do appreciate getting a chance to come here and read the information here.



#17 Shelley Ensz

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Posted 05 June 2013 - 02:50 PM

Hi Msjess,

 

That's great that you have a referral to a new rheumatologist! :terrific:

 

Although you may not appreciate it at the moment, it is also terrific that she didn't order ANA labs. That is because your new rheumatologist may want to run more or different tests, and because rheumies have a very strong tendency to discard results from any other clinic or lab, and to only "believe" results from their own lab. So even if your primary reran the tests, the rheumatologist probably wouldn't believe the results anyway, which would only muddle everything for you.

 

A mold allergy does not sound like fun. I hope there is a source of mold that you know you can get rid of, because people can get extremely sick from it. We had mold problems one time and it turned out that it was over one whole wall of our place but hidden underneath the wallpaper. Not. Good. Stuff.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 msjess

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Posted 08 June 2013 - 10:35 AM

Thanks Shelley.

 

I am currently suffering with this itchy-burning in my hands and feet, and it's keeping me awake all night. Seems the prednisone isn't touching it. It feels like it's just under the skin, and I do see very tiny bubbles of skin? I have looked up dyshidrotic eczema and it seems like that's what's going on here. I finished the prednisone already so I guess it's back to the doctor for me. And I called on the "referral," and apparently the other rheumy will look over my chart, but it's no guarantee he will even see me. I have already had one specialist two hours away make an appointment for me - then retract it a week later, saying he thinks I just have fibromyalgia. Another one told me I just have to take an antidepressant, when I am seriously only depressed BECAUSE of all the health stuff I'm dealing with, and all the uncertainty.

 

And I've since been reading a lot on the other antibodies that I tested positive for, in addition to the anti-centromere ones - the anti-chromatin antibodies - which are also known as anti-nucleosome antibodies. Seems there may be a subset of scleroderma that does test positive for that antibody, although I'm no expert for sure, I wish a doctor would just take my bizarre complaints seriously for once. Just one caring doctor. That's all I want.

 

In my mind, yesterday, I was cataloguing my problems these past few months and all of them - from the months of pleurisy to my huge mouth canker sore to the ear pains/likely ulcers to the migraines/trigeminal neuralgia headaches (ice pick headaches) to my on-again bouts with orthostatic hypotension and my chronic gi troubles - all of it seems to come back to this particular disease. I just can't understand why it is so hard to get a doctor to seriously look at me, talk to me about my problems and come up with a plan of attack. Instead, I feel like I am treading water, trying to keep my head above, but truly not able to advocate for myself effectively. I am just so frustrated. My heart goes out to all of you who have already been here, done this... it truly is disappointing to be treated so horribly by physicians who are supposed to be looking out for you, but just aren't...



#19 Shelley Ensz

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Posted 11 June 2013 - 05:44 PM

Hi Msjess,

 

The eczema sounds awful, I hope the doctor finds something to quell it. Definitely, if there are little bubbles, it is something other than scleroderma skin involvement.

 

That sounds rather difficult for getting in with another rheumatologist.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#20 msjess

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Posted 13 June 2013 - 09:45 AM

Thanks Shelley. I'm at this point still not sure what's going on. Went to see the doctor a few days ago and she thought I may be having an allergic reaction to the vitamins the hematologist put me on after my IV Iron infusion. So I'm now off those. Meanwhile, still having some itchiness, though not as intense, and incredible amount of stiffness and pain and some burning in fingers mainly. There is no rash really on my fingers or soles of feet, but I do see mottling of the color and some whiter round areas, which seems to coincide with the pains I get.

 

I also had a cardiac stress test yesterday - where my blood pressure in the very middle went to 138/42? I'm guessing this is related to my neurally mediated hypotension, but now wondering if that problem is related to vascular changes in scleroderma too.

 

I also have been reading about morphea? And wondering about the type known as guttate morphea. I have been noticing over the past two years or so that my arms/hands and chest are seemingly maintaining a tan year-round (although if you look up close it's more of a cobblestone appearance), and recently noticed lots of whiter spots on my arms in particular. I will take a photo and try and post it in my album later to see if you can take a look and give me an opinion. I have another call into the new rheumy's office to see if they received my referral yet, but haven't heard back.