Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Saw Rheumy/dermatologist...kinda Scared


  • Please log in to reply
7 replies to this topic

#1 shari42

shari42

    Bronze Member

  • Members
  • PipPip
  • 11 posts

Posted 19 April 2007 - 04:22 AM

Hi everyone,

I decided that maybe I should introduce myself, before I start with what's stressing me out, since we never "formally" met. In 2002, I started having terrible problems with my feet...swelling, redness, itchiness. I honestly thought it was athlete's foot...went to the dermatologist...he said that I had raynauds with chilblains and needed to see a rheumatologist because I could have scleroderma. This started a very long journey :( , through more medical professionals than I can even count, and more fear than I even knew what to do with. I was 38 years old with 2 children, aged 6 and 3. I was diagnosed with UCTD in 2004, with secondary raynauds. I finally found a doctor that I could respect and trust :) . I started on Plaquenil about 2 years ago. I also have gastroparesis, GERD, sicca complex, myalgias, joint pain, sun sensitivity, hair loss, itchy dry skin, and intense fatigue (I'm sure I'm leaving a few out :unsure: ). I take Prevacid and Procardia too.

So that's me. I work mostly full time as a psychotherapist. It's really hard to go to work some days. My kids are 12 and 9 now, and I am very involved with them. That's why the fatigue is so difficult. No matter how I feel each day, I have to get up and function. Sometimes, it's really hard.

I went to the rheumatologist 2 weeks ago. We had a long talk. I told him that I wanted to know what my diagnosis is, because all of these symptoms keep coming and going. He stated that UCTD is a real diagnosis. When I pressed him he said that I have symptoms of limited scleroderma and lupus, but he prefers to call it UCTD. He stated that he is treating me for both these illnesses. He referred me to a dermatologist who I saw the same day for hair loss. She said I have chronic telogen effluvium, which basically means your hair falls out faster than it can grow in I think. She ran a battery of blood tests, and wanted to do I biopsy of my ear, which has white deposits on the rim, and of my hand, between my thumb and forefinger, which has thickening. I refused the biopsies, because I didn't know how it would help.

She called me at home a week later (Never a good thing when they call you, in my opinion) to tell me the results. She said, "Let's start with the simple ones first." ;) She told me I had a vitamin B and D deficiency, had too much protein in my blood and needed to have more blood tests and a 24hr test, plus have the biopsies done. I went locally to my internist, who drew the blood work, and to a local dermatologist, who did the ear biopsy, but wouldn't do the hand one, because he said I needed a hand surgeon for it, because it would be too deep. He stated the ear looked like calcification and the skin looked like fibrosis. I have to wait for Monday to find out the results.

I guess I'm just scared. Sorry about running on like this, I just thought I should tell you a little about myself.

Thanks for listening,

Shari

#2 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 19 April 2007 - 04:43 AM

Hey Shari,

I'm glad that you felt comfortable sharing all of this with us. When you are in the thick of it, it can be scary. Sometimes it helps to get it all out and start working through it.

I'm impressed that your rheumatologist is being so thorough, be happy about that. I know it can be very overwhelming when they start throwing so much stuff out at you and then you go through the gauntlet of testing. That is how the whole year of 2006 was for me. I had doctor appointments and testing scheduled several times week for pretty much the whole year. I had to let everything else in my life take a back seat to it and I tried to go with the flow and took one day at a time. I hope you can do that as well. Try not to worry too much until there is something to worry about. Then know we are all here for you!

You are carrying a heavy load, don't forget to take care of you while you are taking care of everyone else. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 19 April 2007 - 04:49 AM

WOW Girl - You are going through a lot right now! I'm so sorry that you are having to deal with disease while trying to work and be mother to two lovely children. I admire your strength and tenacity.

Yes, there is such a disease as UCTD. We have a few articles on it here at ISN. Just click on the link. We also have a few members with UCTD. I'm sure they'll chime in with some info.

I'm glad you decided to get the biopsies. Sometimes that's the only way to identify what's really going on. Bloodtest give some information, but can't tell the whole story and sometimes they can be false negative or positive. Vitamin D deficiency is a big thing with autoimmune. Many of us have been diagnosed with that. I take 400IU of vit D per day plus get in the sun as much as possible. Of course the cold weather tends to drive me inside more.

I certainly hope you get some more definitive answers. Please keep up informed as to result and your overall status. Also - welcome! It's wonderful having you join us.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 19 April 2007 - 04:51 AM

Hi Shari,

I'm very sorry to hear what you are going through, both for illness and for diagnosis. I know firsthand how very confusing that can be. I was UCTD (Undifferentiated Connective Tissue Disease) for a long time, and I also had great trouble believing it was a "real" diagnosis and I've heard many people who are diagnosed with UCTD still refer to themselves as being undiagnosed. To make matters worse, I've heard some doctors refer to it as a "garbage can diagnosis"! Well, if they don't always take it seriously, how can they expect us to? But it really IS a diagnosis, even if it is too blurry for most of us to live comfortably with.

And, in a sense, some of us were/are really undiagnosed (or misdiagnosed) with UCTD because you can just tell that it sounds like their doctor has missed the mark, many of them having more symptoms (and some quite specific symptoms) than others who were readily diagnosed with more specific ailments, such as scleroderma, Sjogren's, lupus, etc. Likely, at every doctor visit they drop another name of something else you might have, as the symptoms wax and wane. It's nice to get an indication which direction things are headed, but then again, if they could only be more specific, and definite, then you'd know what to expect and could deal with it better.

My goodness, what got into me? I just want you to know, many of us around here certainly understand what a very long and difficult diagnosis is like, and you are not alone. And somehow, you'll make it through this time. We're here for you.
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.

#5 Margaret

Margaret

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 996 posts
  • Location:Pennsylvania

Posted 19 April 2007 - 09:18 AM

Hi Shari ,

Welcome to the group. My son's rheumatologist is calling his diagnosis UCTD. He was diagnosed last Oct with esophageal dismotility, restrictive lung disease in Feb., has no voice or only a whisper on many days, major fatigue issues, and has had positive ANA's and Anti-RNA Polermerase 1/111 bloodwork. All that is highly suggestive of systemic sclerosis, BUT.........he has no skin issues or Raynauds. So, he's now UCTD also.

From what I have learned over the past months, though, is that it doesn't really matter the diagnosis (name) because it's the individual symptoms that they are to be treating if possible.

Take care, Everyone.
Margaret

#6 Heidi

Heidi

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 19 April 2007 - 10:12 AM

Hi Shari,

I just posted on another thread also, but I too am UCTD. My whole journey started with pain and numbness in my hands and arms at night (about 6 years ago). My primary care physician thought I had carpal tunnel and sent me to a neurologist who said I didn't have carpal tunnel and I should have an ANA test done. He thought I had Lupus. I had the ANA test and was referred to a rheumatologist when it came back positive. He was pretty sure I had scleroderma (had the puffy hands and no wrinkles on my face) but my SCL-70 was negative. At that time I realized I had had raynauds for some time (but it is fairly mild) and had a lot of joint pain. Shortly thereafter I developed GERD and esophageal dysmotility (which are now pretty well controlled with meds). Anyway, I do fit the criteria for CREST (i have the RET) but my rheumatologist says he doesn't use the designation, so we just keep going with UCTD. As someone mentioned, however, the most important thing is to make sure the symptoms are being treated regardless of the actual diagnosis. It does sound as if your doctors are being thorough and hopefully they will have some treatment suggestions that will help with your different symptoms.

Please do keep us posted and let us know what you find out.

Warm wishes,
Heidi

#7 shari42

shari42

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 11 posts

Posted 20 April 2007 - 02:16 AM

Hi everyone,

Thank you all for your warm wishes and advice. I think everyone's right about the diagnosis not mattering, but it is hard to explain to people what's actually wrong with you. Do you find that too? People just don't get it.

Does anyone else have these Vitamin B and D deficiencies? (I know you said you did Janey). What does the increased protein mean? Dealing with this illness is like a part time job. :angry:

I'm going to call the dr's today to see if they have any results. I'll definitely post if I get any back.

Thanks again,

Shari

#8 Piper

Piper

    Silver Member

  • Members
  • PipPipPipPip
  • 140 posts
  • Location:Canada

Posted 20 April 2007 - 03:03 AM

Hi Shari, I just wanted to say that I have all the symptoms you have plus some bloods being off. I asked my Dr. if you could call my illness UCTD because it's so hard not to have a name for it. He said he preferred to call it grumbling disease. That's even harder to explain to people. I really know how you feel. I know that my Dr. is keeping an eye on everything (yearly) tho and treating the symptoms so I guess that's all that matters.
Just wanted you to know that you are not alone.
Hugs, Piper