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Rheumatology visit

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#1 debo_92


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Posted 19 May 2010 - 04:14 PM

I saw a rheumatologist last week. This is the same one I was referred to around this time last year to have my Raynaud's checked. Last year he told me I had primary Raynaud's and to see him in the fall to plan for winter treatment. I lost my health insurance and could not go back. I went back this year and after speaking with me and doing a brief exam he told me he is confident that I have limited scleroderma (f.k.a. CREST). He then said he was not sure he wanted to label me yet as I am still without insurance. I have suspected limited scleroderma since my visit to him last year but to hear the diagnosis is a bit shocking. I did get him to tell me how I would know if I developed lung involvement as I am already a severe asthmatic. Of course he sent me down to the lab for the 10 vials of blood for testing! Last year's tests did not show any bloodwork indicative of a problem. I am having some very serious joint pain over the last 5 days. Any suggestions on how to alleviate some of that? :wacko:

#2 Sweet


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Posted 20 May 2010 - 04:26 AM

Hi Debo,

Have you received your lab results back? If he took that much blood, and is tossing around the CREST idea, it should show in the labwork, and you won't be wondering anymore. It's kind of nice though for him not to mention it yet due to insurance purposes.

As far as pain, just your basic over the counter anti inflammatories will give you some relief, but there are also prescription strength ones as well that you could get your doctor to write a script for. Did he tell you what to do in the mean time? Do you have a follow up appointment?

Keep us posted.
Warm and gentle hugs,

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International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 20 May 2010 - 01:43 PM

Hi Deb,

I'm happy/sad you kinda sorta got a diagnosis. It rather leaves you in limbo but at the same time rather settles some matters, doesn't it? I found my doctors talked out both sides of their mouth for a very long time (years!) before the diagnosis accidentally slipped its way into my chart.

Here's some flowers for you: :flowers:
Warm Hugs,

Shelley Ensz
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#4 debo_92


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Posted 20 May 2010 - 03:11 PM

Thanks for the responses and the flowers! I called the doctors office today to get my test results. My labs still do not show any indication of either lupus or scleroderma. I wonder if I will be one of the few people who do not have it show up in their bloodwork. My joints are so horribly stiff lately that I can barely walk. I think I will call my doctor's office back tomorrow and see if he wants to do anything for that problem or not.

He made the diagnosis based on my Raynaud's and esophageal issues (reflux and periodic trouble swallowing). My feet have been in almost constant pain for about two weeks now but do not have Raynaud's episodes.

I will not push for a diagnosis to go in my chart at this point. Just want my symptoms treated. I feel like I probably do have CREST so I think the doctor was right.

#5 red


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Posted 20 May 2010 - 11:39 PM

Hi Debo, sorry you are having the joint pain lately! I also have limited scleroderma - mostly esophageal and rectal dysmotility, mild Raynauds, joint pain but negative blood work. Like you, too, I've had severe lifelong asthma, well before the CREST diagnosis. The doctors have been very hesitant to put me on the usual antiinflammatory pain meds (like ibuprofen, naproxen, etc) due to the GI stuff. They put me through 2 months of physical therapy - 1 month of just ultrasound, heat and massage, etc then another month of mild resistance exercises, and I also had 3 more cortisone injections - one shoulder, both hips. The heat treatments felt great but other than that, not any appreciable relief, so they finally put me on Celebrex. Have taken it for about 3 months now - it does help some but I was feeling a whole lot better on prednisone. They tell me prednisone is not a long term option because of side effects, though. Perhaps your doctors could put you on a short course of prednisone and see if it helps?
Hoping you get some relief soon,

#6 enjoytheride


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Posted 21 May 2010 - 02:49 PM

Surprisingly I usually feel better if I can manage to be active. For the last few weeks, I have hobbled around when I first get up in the morning but got better as I kept moving. I did notice that I also had trouble if I sat with my feet raised up even with the chair.

You might want to check your shoes too as I have found that unevenly worn shoes cause me a problem too.
I hope this resolves itself for you soon.

#7 bookworm


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Posted 22 May 2010 - 07:43 PM

Hi Debo,

I take Celebrex every day as well as 5 mg. of Prednisone.

Red, my rheumatologist told me I'd be on the Prednisone for the rest of my life and that we have to weigh the benefits to the side effects. She said she wasn't worried about it as long as it was around 3-5 mg.

I think I would be in a wheelchair watching the grass grow if I didn't have the Prednisone. As it is, I am not in pain all day long every day and am pretty active.

If you are in pain day in and day out, you have no quality of life. It becomes a struggle just to keep going.

Until you get insurance, I would not push for a diagnosis on paper. In the past, insurance companies would just call it a pre-existing condition and refuse you insurance. With the new health plan, I don't know.

This doesn't mean your doctor can't treat you as though you have Sclero and he/she seems to think that's what you have. Ask specifically for pain medicine if that's what you need. Tell the doctor what problems you are having. All they can do anyway is treat the symptoms. It's pretty important to treat rheumatoid arthritis early to prevent serious joint damage.

Good luck!

Mary in Texas

#8 Joelf


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Posted 23 May 2010 - 05:46 AM

Hi Debo

Sorry to read that you're in serious pain with your joints; constant pain can be very wearing!! :(

I also have limited Sclero and apart from my lungs the next worse problem is Raynaud's and joint pain. Although I don't really like to be on Prednisolone and was rather reluctant to take it I've found that it really has helped my joints which were very swollen and excruciating prior to taking it and has also improved my lungs so the benefits have outweighed the side effects.

Has your doctor mentioned anti-inflammatories or possibly a short course of steroids to help you over the present pain you're suffering?

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#9 debo_92


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Posted 23 May 2010 - 03:18 PM

Thanks again for the great responses. I know the wonders of prednisone (I think all severe asthmatics do!) but I also know the dangers. My grandmother was on it as the main form of treatment for her asthma for her entire life. By the time she passed away her spine had collapsed in on itself, she bled if she bumped her leg on a padded chair, and was quite obese. All of this was due to the prednisone. I know that there are times it is absolutely necessary and I do take it then, I just choose to try everything else possible first. I will keep it in mind though as a possible suggestion to my doctor.

I hope to hear back from my doctor's office on Monday!

You are all a great group of people and I am happy that I have this site to come to!