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Saw rheumatologist. today, more tests coming


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#1 mando621

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Posted 21 April 2009 - 03:37 PM

Hi,
I am writing to keep you up to date in my search for answers. I saw the GI specialist in Madison and he told me my esophageal problems are a connective tissue problem. I have a PH Impedance test scheduled for the 1st of May.

Today I saw my rheumatologist, and presented my new information about the esophageal dismotility and the specialists opinion that it was a connective tissue disorder. The rheumatologist wants me to get the lip biposy to test for Sjogren's and I'll think about that. Then he did a quick check of my nail beds. He said that this time they are abnormal, so with my Raynaud's, esophogeal abnormality and possible thickening of the skin on my wrist, he said this could be scleroderma. So he ordered three more tests to have, the PFT, an echocardiogram, and a skin biopsy of my forearm. I am glad that things are moving into the phase where we check to see if there are issues that aren't seen that should be taken care of. He also had blood tests ordered to check antibodies again.

They've already scheduled the echo for tomorrow evening. The consult with the surgeon to do the biopsy is Friday. I don't know why I'm not seeing a dermatologist (?) rather than a surgeon unless he would end up sending me to a surgeon anyway. Oh well. I explained that the nurses had a tough time getting needles through my forearm to put in IV's, and my fingers feel smoother and I have a lot of trouble separating papers and cards.

I'm glad that I mentioned that there is a form of scleroderma without major skin involvement, because he seemed ready to dismiss things again after pinching the skin on my fingers and not finding much of a problem.

I'm strangely calm about all this. I will have to wait until August to see the rheumatologist again, unless a major problem comes up from the tests (my guess). I am fine with that since I don't seem to be having a fast progression on anything, and we will know more once the tests are back.

I really wish there was someone here I could visit with, but I'm not ready to burden friends with this just yet, and my hubby isn't much of a talker. By the way, he started a new job which is working well, as long as the temporary part of it becomes permanent then it will be great!

Thanks for being here to listen and support.

Mando.

#2 Jeannie McClelland

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Posted 21 April 2009 - 04:29 PM

Hi Mando,

Whew, it sounds like things are going the right way, in terms of care, at last. It's kind of a relief, isn't it?

I feel very strongly that the reason I'm doing so well was reasonably early diagnosis (due to a lot of testing at the very beginning) and intervention where needed. I hate to read that our friends are having to argue for testing or even worse, being dismissed out of hand because their symptoms don't match a particular doctor's personal criteria for diagnosis.

I'm glad we're here for you - you are for us!

Best of luck with the tests and let us know the results as soon as you get them, OK? I'll get everybody practicing a jig for your happy dance in anticipation of good news.

Warmest of hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Penny

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Posted 21 April 2009 - 04:41 PM

Mando,

I am so glad for you that you are finally getting the testing you need in what looks like a very timely manner. :)

Hopefully you will soon have results in hand and treatment started... You go girl!

I will be lining up a polka band for the happy dance to come while Jeannie works on some dance steps.

#4 Buttons

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Posted 21 April 2009 - 09:22 PM

Mando, it has taken a long time for you to get people to take everything thats been going on with you seriously and at long last that now seems to be happening.
Just want to say best wishes with all the testing your having done this week.

Jensue

#5 mando621

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Posted 22 April 2009 - 01:00 AM

Hi Jeannie and Penny,

Thanks so much for your support. I'll practice too. I have been working on a tune on the harp, new instrument I decided I couldn't live without. The title of the traditional Irish tune is "Pull the knife and stick it again" which sounded appropriate when I was angry about my husband's layoff - maybe not the best choice for a happy dance.

It really seemed like this time the doctor listened better. Of course, I'd been to two different specialists at Madison, one a rheumatologist that said it could be undifferentiated scleroderma. She had recommended the swallow study and esophageal evaluation. I went ahead on my own with that, and then ended up at the other specialist that gave the connective tissue label.

My rheumatologist finally was listening and took my information seriously. Up until now he seemed angry or disgusted with my problems, like I was trying to get attention from a doctor about nothing. My thoughts on that: he had to acknowledge that I couldn't fake results from a manometry test. I'm glad he ordered the PFT because I've had more fatigue.

Anyone know of another tune to make a set with "Pull the knife and stick it again"? It is a nice sounding jig in e minor.

Mando.

#6 Jeannie McClelland

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Posted 22 April 2009 - 01:33 AM

Hi Mando,

How about One of these: The Flooded Road To Glenties, The Cockerel In The Creel, The Lisheen Jig, or Lannigan's Ball? Alisdair White did the first 2 with Pull the Knife and Matt Molloy did the last 2, I think. When we moved 'across the pond' the music collection didn't make it~

There's something deeply satisfying about having undeniable evidence to present to a doctor who has been inclined to scoff.

I hope the fatigue is just scleroderma fatigue and nothing lung related. Have you read any of the articles we have on that subject? If you scroll down the page, you'll see articles on possible causes and, still further down, coping articles. The one entitled Cancer Related Fatigue is by far the best one I've ever read!

Big hugs and have fun with the harp!
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network