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Biomarker for Diffuse Scleroderma skin has been discovered!


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Some referrals, some tests, and a new symptom.


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#1 amberjolie

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Posted 22 December 2011 - 09:34 PM

I saw my retiring rheumatologist again a couple of days ago (this is the good one, not the one who thought I was ruminating about my health). I may be getting somewhere. He's sending me to a dermatologist for a skin biopsy, and a gastroenterologist for an endoscopy. I don't have huge esophageal issues, but he said it's good to check for scar tissue in advance so something can be done if it's seen.

Also, he said my bloodwork from about a month ago showed something on the CK test, which as far as I understand could mean muscle cell destruction. So he's sending me for a test (some sort of electro-thing that I didn't write down) which supposedly is different than the one used to see my carpal tunnel syndrome.

So I think I'm getting somewhere.

But now, I have a new symptom that came up last week. I can't open my mouth very far. Not because the skin is tight, but because my jaw is tight and sore on the right side and doesn't open any farther. I can't eat a banana or a sandwich properly, because I can hardly open my mouth wide enough to fit it. Does anyone else have this problem? Is there anything that can be done to help it?

#2 Amanda Thorpe

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Posted 23 December 2011 - 08:21 AM

Hello Amberjoile

I wondered if it was TMJ (Temporo-Mandibular Joint) related but according to the PubMed article we have: Inflammation of the temporomandibular joint only rarely and slightly reduces the range of mouth opening. I then thought of Trigeminal Neuralgia as that causes jaw pain although it's described as stabbing or electric shock like. Have a read of our page on dental involvement as I am sure it will be much more helpful than me. As it came on quickly maybe it will go away quickly as well?

Just as an aside (no way am I saying this applies to you) heart attack/angina pain can radiate to the jaw as per this article from Medicinenet.com.

Take care.
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#3 miocean

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Posted 23 December 2011 - 08:48 AM

Dear Amberjoile,
I have a similar problem with my mouth. Although my skin has softened back to normal and my mouth measures normal when I open it, I can't open it wide enough to eat a sandwich and I eat a banana peeled and with a spoon! I learned to ask for sandwiches without the bread/roll, not necessarily for diet concerns but because of the mouth issue. I also have trouble chewing some foods and have learned to have softer items. Apples are impossible for me to bite into.

There are mouth exercises you can do while you are sitting around or in the car. Open it as wide as you can, the close, keep on repeating. Ask your dentist for some other ones.

Good luck with your tests!

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#4 Joelf

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Posted 23 December 2011 - 03:04 PM

Hi Amberjolie,

Well, it is good news that you do seem to be getting somewhere and that your rheumatologist is referring you to a dermatologist and a gastroenterologist.

Thankfully, I haven't experienced the tight mouth that you describe, so can't advise you from my own experience. The exercises that Miocean has suggested sound a very good idea and hopefully might prevent the problem worsening, even if it doesn't actually improve it for you.

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#5 amberjolie

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Posted 23 December 2011 - 08:20 PM

Thanks for the replies!

Miocean's experiences seem to match my own (although I'm not quite at your stage). I will try some of those exercises.

Amanda - I had wondered about TMJ as well. Apparently the gastroenterologist can also deal with jaw issues (according to the rheumatologist's secretary), so perhaps he can help me with that. I don't have a stabbing or electric pain on that side (the right side), however I have had some issues with my left side recently that have come and gone that were a pretty sharp pain that almost felt like a sore throat but came on too quickly for that. I couldn't isolate for sure if it was my ear or my jaw, but I think it was my jaw. I will look more into trigeminal neuralgia to see what it's all about.

Thanks for mentioning about the heart, although you're right, that doesn't apply to me, because I only feel the pain when I try to open my mouth wide, so it must be associated with the muscles or joint somehow. I would think an angina or heart attack would give a more constant pain.

#6 Shelley Ensz

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Posted 26 December 2011 - 12:17 PM

Hi Amberjolie,

I'm glad you are making some progress with your rheumatologist.

As for your jaw, I've had a variety of jaw issues, including TMJ. But I also had once where my jaw locked, so that it would only partially open. I couldn't get it open wide enough to eat a sandwich, or even to yawn. I happened to pass a chiropractor's office on my way home from work that day. He treated my jaw (and neck, too) as it was just knotted up from stress. With some additional home care, and relaxation, my jaw was good as new.

I happened to recall that I had been clenching my jaw while working on a writing project they day before. But just as often people grind their teeth during sleep and so are unaware of what caused it. If this turns out to be the case with you, and it continues to happen, you can check with your dentist as you might need a mouth guard to prevent tooth grinding (and jaw locking) at night.
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#7 amberjolie

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Posted 27 December 2011 - 09:54 PM

Well, whatever this jaw thing was, it seems to have been temporary. I just realized tonight that I'm able to open my mouth as wide as usual, with just a little bit of pain when I open all the way. So it probably got better gradually without me even realizing it.

I think I do grind my teeth, because I often find myself during the day with a clenched jaw. It's strange, though, because before all these autoimmune issues I never did that. So I don't know if it's a mental or emotional thing that started when my other symptoms started, or whether because my mouth is so dry all the time with Sjogren's, that somehow it's making me want to clench my jaw.

My dentist did suggest the mouth guard at my last appointment, but I wanted to wait first to see if I really needed it. Perhaps if I get more of these episodes with my jaw I may need to look into that.

#8 Joelf

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Posted 28 December 2011 - 04:57 AM

Hi Amberjolie,

Oh, what a relief for you that jaw problem seems to have resolved itself! :emoticons-yes: Hopefully it won't recur again and will continue to improve.

I also tend to clench and grind my teeth especially when concentrating hard on something. It doesn't make me terribly popular with my dentist as she then has to do any remedial work on my teeth caused by my gnashing jaws! ;) :lol:

Perhaps if you do have any more trouble with your jaw it might be worth considering the mouth guard.

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#9 janey

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Posted 28 December 2011 - 08:29 PM

Amberjolie, I'm glad to read that your jaw problem has resolved itself. I had the some problem for a first weeks during the onset of my diseases. After being diagnosed with scleroderma, a blood test showed my CK (also noted CPK) as being high. The CK indicates the amount of skeletal muscle enzymes in the bloodstream. The higher the muscle inflammation, the higher the amount of muscle enzymes. A high CK is a possible indication of polymyositis (PM), another connective tissue disease (like scleroderma). Polymyositis can weaken the skeletal muscles primarily between the neck and knees. An EMG or electromyography is a test used to evaluate the electrical activity of the skeletal muscles which can be affected by PM. Since your current rheumatology even tested your CK it appears you've found a good doctor. It's not a common blood test, but PM is something that can overlap with scleroderma.

Thanks for keeping us up on what's going on. We all here to help and support you as much as we can. Take care of yourself.
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#10 amberjolie

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Posted 29 December 2011 - 09:18 AM

My muscles certainly seem to be weaker than they used to be. Part of it I'm sure is lack of exercise (I used to exercise a lot, but I don't do much anymore because I have a new job that only gives me a half an hour for lunch), but it did seem like I was a lot weaker than before.

I also figured with the Sjogren's, and bad joints, that maybe it was just part and parcel with that. But it will be interesting to see what the EMG shows.