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Biomarker for Diffuse Scleroderma skin has been discovered!


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Could this finally be my proper diagnosis/


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#1 CanBrit

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Posted 23 November 2014 - 07:23 AM

Hello to you all. I will try to keep this as brief  as possible, but I unfortunately have a lot to list. I'll start with conditions I know I have, or at least were diagnosed by specialists to have. I am a 58 year old woman, 125lbs 5'5"

 

Fibromyalgia, Chronic Fatigue, Myofacial Pain Syndrome, GERD, IBS, Degenerative Disease, High Triglycerides

 

Undiagnosed issues. Severe on and on carpal tunnel like symptoms

 

Last year, I had a severe attack of diarrhea, which the next day caused me to pass a lot of blood clots. I went to the hospital to get assessed, but apparently the CT scan they did went wonky and they thought I had something wrong with my heart (I didn't), They referred me to a gastro guy who first said I had Crohns, but then after the coloscopy, said I didn't. I asked him why I bled so much then and he said he didn't know I had bleeding? Anyway, needless to say, there was no diagnosis and no explanation for the bleeding.

 

Fast forward to this week. Again another severe diarrhea attack followed by blood clots the next day. Not as many and I didn't go to the hospital. In three days I have had no more problems except loose stools.

 

Now, my present situation. I have a line of thick skin running down the sole of my foot from in between my toes. Sometimes it is quite painful to walk on. It looks like a scar forming where there is no cut. There is a second smaller hard line coming of this running further down my foot. 

 

I have what I thought was a ganglion cyst on my right wrist and have had several carpal tunnel like issues mainly on my right wrist but also on my left as well. I also suffer from white hands and feet with very little exposure to the cold, which results in extreme pain as the extremities get warm again. I am almost like allergic to the cold and wind will give me hives.

 

So why am I here? Well I read a post from another member from 2013 and it could just have easily been me writing the post. 

 

If anyone can take the time to read this and respond, I would greatly appreciate it. For many years, I've always felt like they were missing something but I hate coming across like a hypochondriac. My father was a family doctor and I did learn a lot about medicine from him, plus reading his books as a child. My present family doctor is a wonderful guy, but it concerns me that he didn't seem too concerned that they couldn't answer my bleeding last year, and now it is happening again. 

 

Thank you in advance.



#2 Joelf

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Posted 23 November 2014 - 10:38 AM

Hi CanBrit,

 

Welcome to these forums!

 

I'm sorry to hear that you're having so many worrying health problems and I understand how anxious you must be feeling about the unexplained bleeding you're experiencing. I've suffered with bilateral Carpal Tunnel syndrome, which was alleviated to a large extent by decompression surgery, so I can sympathise with the pain you're having from it.

 

Please note I have no actual medical training, although one of my little pleasures is telling my long suffering doctor how to do her job. ;) However, I would suggest that the unexplained bleeding which you're experiencing definitely deserves further investigation.  As to the hard skin on your foot, the possible Raynaud's symptoms and carpal tunnel issues, although they can be a sign of Scleroderma, equally they can be symptoms of other diseases as well. Unfortunately autoimmune diseases such as Scleroderma can be notoriously difficult to diagnose, not least because they take so many different forms and affect everyone differently. I think that perhaps you should go back to your doctor again and insist firmly that further tests should be done on you to try and determine the cause of the problems you're having.

 

I do hope that you will be able achieve an explanation from your doctor and a possible diagnosis; not knowing and therefore worrying is one of the worst aspects of illness.

 

Kind regards,


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#3 CanBrit

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Posted 23 November 2014 - 12:10 PM

Thank you so much Jo. This may sound strange, but everything I've been through since being diagnosed with Fibro in 2005, (I worked until 2008 when ice and snow came off a three storey building and hit me on the head and shoulder which ended my career shall we say), I don't really have much fear or worry. Having chronic pain has taught me to appreciate every single day and I don't worry too much about the next one. 

 

My background is fraught with auto immune issues. My mother had female alopecia since she was a teenager, fully bald after my birth. My older sister has Crohn's disease. My son has Psoriatric Arthritis. Not related,  my husband has Crohn's Disease, was hit by a car last year and had a heart attack. Lets say it was a bad year for both of us. It goes on and on and we do too. :emoticons-yes:

 

It's more that I'm fed up I guess. Anyone who has bowel bleeding diagnosed is going to wonder, but Dr's do tend to throw everything under the fibro bus. While my Dr is an awesome guy, we first started going to him when he had just graduated, we both had to learn about Fibro together. Mine started after a stomach virus and a few Dr's felt I had bone cancer. Thankfully by test elimination, I was diagnosed with Fibro in three months. Quite uncommon for the speed.

 

I suppose, what I am wondering about is the connection between this weird scar tissue forming and the bowel bleeding. I do know that scleroderma can affect the internal organs. I had a hysterectomy at 34 due to severe endometriosis and several quite large fibrils as well. The guy who did my surgery spend twice the time trying to get rid of all the adhesions than the actual procedure itself. I was left with one ovary, so didn't go into peri-menopause until my late 30's.

 

Sometimes I just wonder about all the connections. There just seems to be so many. Fibroids, Fibro, Fibrous tissue.This thick lump on the right side of my wrist, about the size of a quarter. 

 

I will be asking my Dr for a referral when I see him in a couple of weeks, but to whom?  Another gastro guy? I've already had 3 colonoscopies in as many years and they really don't want to do another one so soon. Do I need a skin specialist? It is really all so confusing. I'm hoping that this appointment with my Dr. will result in some attention paid.

 

Thank you very much for your response and advice. It is appreciated greatly.

 

CanBrit



#4 miocean

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Posted 24 November 2014 - 04:08 AM

Dear CanBrit,

 

It is so confusing trying to figure out what doctor to see! If I were you I would explore every avenue and ask for referrals to a rhuematologist and a dermatologist and I would research ones that are familiar with scleroderma (not an easy task.) 

 

I wouldn't want another colonoscopy either. I had 2 in one year and that was plenty! Best wishes with finding answers.

 

miocean


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