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Latest Rheumatologist Visit

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Hi everyone, I have recently visited my Rheumatologist who says that my condition is somatic.  i.e. imaginary and that  I only have Limited (i.e. low grade) Systemic Sclerosis.

Last year, I was hospitalised with aspiration pneumonia resulting from gastric reflux, though again, this had nothing to do with Systemic Sclerosis.


He also said that I should wean myself off of my proton pump inhibitor, but when I do, I am unable to sleep due to severe reflux, which I occasionally choke on.

I've recently had an operation to correct urine flow due to fibrosis of the urethra, which again is apparently not related to Systemic Sclerosis.

I now have to catheterise weekly to keep the urethra dilated, which resulted in strong antibiotics being prescribed, the result of this was severe black blistering on my hand (I posted a picture of this earlier). I believe that this was a severe reaction of my immune system to either the infection, or more likely the antibiotic.

My Raynauds  is not considered severe, yet the pain of what feels like frostbite is simply awful (but apparently imaginary).

I can definitely feel that I am getting out of breath a lot more of late, though my lung function tests appear to be OK as has been my echocardiogram and renal tests.

He also thinks that I should wean myself off Pregabalin because he says that it is not being used for anything to do with Systemic Sclerosis.

On a side note, my Hba1c level is 49, but my general practitioner says that I am not diabetic. Is that correct?



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Hi Dimarzio,


Sorry to hear that you're still not getting much support from your rheumatologist. However, I think you did say on another thread you were being treated by a scleroderma expert? If this the case, then I would simply ignore the rheumatologist and go straight back to the scleroderma expert with details of the symptoms you've been experiencing. (I'm not quite sure why you would be seeing a rheumatologist as well as a scleroderma expert, unless the rheumatologist is at a local hospital and is treating you inconjunction with the scleroderma expert?)


I understand that an Hba1c level of 49 is right on the edge for a diagnosis of diabetes, so I suppose that at that level, your general practitioner considers that you're not diabetic at the present time. There's a lot of info on our Diabetes pages.


Kind regards,

Jo Frowde

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International Scleroderma Network (ISN)

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