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Georgy

Scleroderma or something else? Please help

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Hi everyone,

 

My name is George and I'm new to this forum. 

 

Please sorry for my English. 

 

Just a bit of a history of my disease. 

 

In July 2018 I was noticing that I have a mucus and some blood in my stool (fecal). It had been about 6 month since I firstly noticed it, but it happened once in a week or two and I didn't pay attention. 

 

I also have GERD and reflux. So when I had a schedule check up with my Gastro doctor I told he that it was bothering me a bit, but it didn't give me any pain or something. She told me to do a colonoscopy to check. 

After the colonoscopy, endoscopist told me that I might have Crohn's disease, but he's not sure. He did a biopsy and maybe it's just some kind of infection that will go with no complication. I asked him what is Crohn's disease and he told me it's not a big deal, relax and go. Next day I felt great and I totally forgot about it. In a week I went to my Gastro to check with her. And that's where it's all began. When I told her I might have some kind of Crohn disease or whatever it is, she told me it's a really really bad. Being a very hypochondriac person I started to worry and ask her what it is.  She told me it's a very dreadful disease and you should be prepare for the worst. I was speechless as I couldn't talk, I was so scared. For me it was a death sentence. 

 

After I got home I checked google and some forums, It made me panic and I was extremely depressed and was thinking about how I say "goodbyes" to my children and wife before going to some kind of hospice. Next 3 days I haven't eaten and slept at all. Then I decided to make a full checkup for Crohn's at the best hospital in my city. After another colonoscopy, CT, Ultrasound, all the blood test, they rule it out. They told me I have just some inflammation and it's something you don't have to care. Biopsy proved the words of my doctor and I was good to go. But after those nights with huge panic and depression I noticed one symptom. My knees started to crack all the time. (when I was in that hospital I mentioned in and they told me it's something not connected to the Crohn or any bowel problems. Next 2-3 months I spent visiting  all kind of the doctors to find out what's going on and why my joints are cracking and popping. They all told me cracking is ok while it give you no pain. But 4th rheumatologist decided to do some blood test and I was ANA positive. 1/320 DFS70. He said it's not a good sign and send me to a rheumatologist center. 

 

They ran couple more tests and confirm ANA. 1/320 (h+sp). They told me there's nothing to worry as many people have ANA positivity with no disease. I have already been familiar with ANA and all possible diseases and was under huge pressure. I have read many articles where there was no indication of healthy individual with ANA.  All of them were sick, but sometimes it could take 2-4 years for the disease to manifest. So they left me with nothing and send me home to wait when the I have something more noticeable than just a cracking and popping of joints. 

 

Another symptom I notice is that it's a bit painful to lie down or sit on hard objects. it feels like I have no underskin tissues and I touch the object with my bones. Like a bench when you sit on it, or if I stay against the table and touch with my knee, I feel like I'm touching it with my knee bone. Also when I got a back massage I felt like the massage therapist was rubbing my bones on my back and shoulders. 

 

The popping and checking was spreading to all of my body for the next year and now I have popping and my knees, elbows, shoulders, ankle cuffs, wrists, neck, back. Any time I move my joints are popping. 

 

Also I notice that my fingers got cold when it's freezing outside. There was some color change to white, but it was one time and I can add photo for you to check as my rheumatologist told me it's not really a Reynaud's.  My fingers were white and I could see the veins inside them. It was in a winter 2018-2019. 

 

Now its getting cold out there and I started to feel the same feelings again. 

Also I feel all the tendons on my back rubbing each other something  in my shoulders when I move shoulder back and forth. Same with ankle cuffs. My doctor told me it's nothing but on your website it's being mentioned as TFR. But I'm not sure it what I feel is it. 

 

I did a Immunoblotting for SLE and I got CentB ++. Then I redone it and it was negative. In a week I decided to do a Sclero immunoblotting and it was all negative as well (including CentB). 

Then I went to our hospital and ran the Centromeric antibodies and Scl70 (just in case) test with quantitative measurements. 

Cent was 1.3 our of 10. 

Scl70 2.5 out of 20. So both negative. 

DsDNA - 5 out of 20. 

 

I have no marks on my skin or any skin tightness, but this popping and cracking is killing me. 

 

Magnetic Resonance Tomography shows some arthritis in my knees, hip joints, shoulders have it too, but minimal with some tendinitis or something with tendons. 

 

It's been 1.5 year since it's started and it's spreading. I also feel very fatigued all day and extremely depressed. 

 

Any thoughts what could it be and what should I do as rheumatologist sends me to psychiatrist (who I actually visit all the time anyway but with no luck. )

 

Thank you.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Hi George,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering some rather unpleasant symptoms; of course it's possible that they could be caused by scleroderma, but it's equally likely that they're completely unrelated and could have many other causes. Autoimmune problems are extremely difficult to diagnose and a complex disease such as scleroderma requires a much more specialist diagnosis than merely putting symptoms into a search engine.

 

Please note I have no medical knowledge and would suggest that as you appear to be very concerned about your symptoms, you should go back to your rheumatologist for further investigations.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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 George, I have GERD and Raynauds, which you also appear to have, but the comment you made about feeling like you have no underskin tissues and that everything you touch feels like you are touching it with bone is exactly the same as I feel and I have formally being diagnosed with limited systemic scleroderma.

From what you say, Scleroderma may well be a possibility, but equally may be dozens of other things too or even a collection of unrelated issues.

Sometimes it is best to just deal with the symptoms, whatever the cause is (unless it is clearly identified).  As there is no cure fore Scleroderma, that's how it is treated too.

I do hope your symptoms improve or that you learn to live with them better.  That being said, please try to be positive and try to concentrate on leading life to the full as much as you can.

Please don't give up.  Even if the worst is confirmed, you can still live a ling and fulfilling life.

Dimarzio

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Thank you for all the answers!

 

Dimarzio

How long have you been suffering from these symptoms? 

Do you have other issues or complications of scleroderma? 

What's your ANA or maybe there are antibodies that have been found in your blood? 

 

Was your doctor familiar with underskin tissue feeling? 

 

Thanks in advance

 

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Hi George.  I was formally diagnosed in Sept/Oct 2015 but had slight GERD for a few years beforehand.  The Raynaud's has been there to some extent since around 2010/11, though I didn't recognise it as such and sought no treatment.

My skin has been sensitive all of my life and I've never felt comfortable wearing anything other than cotton next to my skin (wool is extremely uncomfortable).

The feeling that there is no padding between my skin and bones goes back to around 2010/11 as well, though I think it may well be a lot longer to a lesser degree.

I have not been provided with a specific pattern other than the results of my ANA test stating that  they "show a strong association with Limited Systemic Sclerosis".

The only other symptoms (which all the doctors choose to ignore, having raised it  a dozen or more times) are what feels like Raynaud's in my eyes and that I tend to feel faint, unsteady on my feet and easily lose my balance in colder weather.

Additionally, I get a lot of cramp in my legs, back, shoulders, abdomen and chest.  Doctors continue to ignore these as well.

Finally, I have been doing a full series of stretching exercises for about 2 years to improve tightness of the ligaments in my legs, pelvis, groin, back, chest, neck and shoulders.  These have considerably improved my flexibility and reduced the (apparently imaginary) pain I was getting from physical activities).

I hope this is of help, but my main concern is that none of my doctors take the problems seriously, so I simply make the best of what I have and do as much as I can do for as long as I remain able to.

Regards, Dimarzio 

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