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KatieG95

Worried - I have scleroderma being misdiagnosed.

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Hi all,

 

A huge worrier here. I am convinced I have scleroderma. My symptoms started in September. I am a 25 y.o female.

 

I just felt unwell, had a bruised feeling in my ribs and vision had become blurry in one eye. I have since had rib and pelvic pain, trouble swallowing, digestive issues and most recently I am now experiencing unexplained raised rashes on legs, on/off rashes on other parts of my body with white blotchiness, red flat itchy spots on my hands, an all over feeling of being ‘sunburnt’, extremely watery eyes and I now have had joint aches on/off in my fingers though the aches seem to be going whilst the rashing is intensifying amongst a new, scary symptom: a skin toned lump on my middle finger, just below my nail on the side of my finger. 

 

What worries me most is that I am now linking symptoms I’ve ignored in the past to this disease. I have had a chronic cough for 6+ years that gets worse at night. I also have had calcium deposits develop on my two middle toes when I was 15 years old, I blamed tight shoes at the time. I have also dealt with cystitis-like symptoms on/off since a similar age, with no infection ever present - I’m now assuming it is likely interstitial cystitis. I have also had a head CT scan that revealed incidental dural calcification.

 

No general practitioner is concerned re my symptoms and won't let me see a rheumatologist or dermatologist. I feel alone and scared, and can not afford to pay for this at the moment.  I have had a lot of tests:

- 2 Chest Xrays (clear)

- Neck ultrasound/transvaginal ultrasound (clear)

- CT of abdomen and pelvis (clear)

- Upper gastroscopy (no problems found), gastro told me to get psychological help..

- Numerous bloodtests, all normal, including ANA/ENA that I got privately after doctors refused me them

 

I still have an instinctive feeling something is wrong and I can’t shake it off. I don’t think I have obvious Raynaud's though my feet have always gone very mildly purple and tingly all my life but I have always had bad circulation and am very pale skinned. However, for 4 weeks now my hands have become pruney and wrinkled as if submerged in water and this never goes away, my finger tips also feel extremely raw and tender as if some skin has come away. There is tiny parts peeling and my skin in general is very dry, irritable and itchy. 

 

Whew, sorry about my long post, but these 5 months have been bad for me truly and I feel scared and alone. Everyone is blaming my symptoms on stress or atypical manifestations of health anxiety and whilst I agree I am anxious, I am showing real, visible symptoms but have accepted mental health therapy anyway as that is all the doctors keep providing.

 

My main concerns are my rashes, itchy skin and wrinkly hands. Also the new lump that has appeared on my finger! Every time I convince myself that it might be something minor like allergies a new symptom appears further supporting my suspicion. I’m also concerned re the calcium deposits I have previously had on my toes (now left lumps) and the dural calcification found. My hands and feet are also always cold, though I have always dealt with this in the winter.

 

I am just so frightened beyond words. What if my chronic cough is from lung damage and chest xrays can not see it? Does scleroderma cause visible damage to the oesophagus or the sensation/dysphagia? Could my itchy rashes on my body and flat itchy spots/wrinkly fingers be symptoms of scleroderma? Interstitial cystitis has been connected with auto immune diseases I believe. This new lump on my finger - hardening of skin?! I’m really afraid as you can tell.

 

I have had two negative ANA blood tests, one in 2017 and one a few weeks ago. I also got ENA bloods done to test for scl70 in a panic, I wish I could find a way to get the ACA blood test done to look for the anti centimetre(?) antibody but this does not seem to be provided by any hospitals and no doctor will give me a referral. I know it is possible to have scleroderma with negative bloods.. agh! I just want to cry. My eyes are becoming more blurry and irritated, skin more irritable and the lumps and IC and being ignored by GPs is making me honestly lifeless.

 

Any advice appreciated, I honestly just wanted to have an emotional rant as I can’t handle this anymore. Does this sound like sclero? Do most people live a long life with this disease as a whole? What steps forward do I take, do I trust GPs and ignore my symptoms?

 

Thank you to anyone who has taken the time to read my worrisome-minded essay. 

 

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Hi Katie,

 

Welcome to these Forums!

 

Whilst I can see that you're obviously concerned, the symptoms you describe could relate to any amount of health problems and not necessarily scleroderma, which is a rare and extremely complicated disease to diagnose and treat; certainly not something that you may think you "might" have, after putting a few symptoms into a search engine. Please note I have no medical training, but the fact that you appear to have had innumerable different medical tests, most of which appear to be negative, would lead me to the same conclusion as your doctor.

 

Far more concerning is the amount of anxiety you're experiencing. One thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases. I would suggest that some of the symptoms with which you're suffering could be due to your anxiety and stress.  Anxiety is a symptom that needs to be addressed and minimised when one is dealing with a chronic illness such as scleroderma or any other medical problem and as it's perfectly normal to experience depression and anxiety along with illness, it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with.

 

Kind regards,

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Thank you for your response and opinion, I am on the UK waiting list for CBT Therapy in the South, that comes with a 4 month waiting list unfortunately but I am open to trying to resolve the anxiety side of things. I just can't shake that these symptoms are not scleroderma, I know how ignorant it sounds - but the wrinkly hands, raw finger tips, skin peeling, hands indenting easily and holding the indent for hours, lump and rashes are completely freaking me out. I understand google is not a doctor and will never replace a specialist, but having every symptom I find odd have the first or second result popping up as scleroderma is really, really getting to me. 

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