spero

Scleroderma or Diabetes

23 posts in this topic

Hopefully your primary will be happy to write up a referral for you. That should at least get you started on the way to the specialist you need to see.

If the specialists you want to see are in a hospital practice, could the hospital social worker help you make arrangements?

Or maybe you can get a referral for a second opinion? Not that you seem to have been given a first one yet.

For quite awhile, I found myself going to my primary doctor under an HMO- I would go and go but nothing happened. I was able to switch to a PPO and pretty much similtaneously, found another doctor. Since then I have been making progress, chipping away at things. Sometimes I will see a specialist totally on my own- sometimes my doctor will make a referral. Since he does not have to get agreement from the insurance, the amount of paperwork he has to do is much reduced. Of course, the money it costs me to do these things is much increased but I do feel much less frustrated about my care.

A number of this that have bothered me have been helped and I have hope that some more will be addressed. Not everything is resolved but it is comforting to know that I have done what I can for myself.

I hope that you are soon past these road blocks too.

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Hi Spero

 

Well...where to start...sure hope you get yourself a specialist you feel good with because that is very important...and yes, one that specializes in scleroderma would be best to rule it out or not, as the case may be when they can get to the bottom of your symptoms. I agree with the others, a second opinion would never hurt.

 

Doesn't sound like going back to the previous specialist would be of any value to you from your comments below so I would continue to look some more for another one if it were me. Don't ever give up, it just takes longer sometimes to find a good one you click with.

 

My Fibromyalgia was diagnosed by the physical pressure points (you need 12 of 18 to be diagnosed) along with the fatigue, etc. My rheumatologist that diagnosed me many years ago with FM told me that joint pain is definitely not a fibro symptom (another doctor also told me that myalgia means pain in muscles not joints). It always felt like I was constantly running fevers all the time back then too (also not an FM symptom = this lead them to think perhaps I also had an unknown autoimmune problem plus FM which he also said could take forever to uncover. His meaning; I would have to get much sicker for it to show itself as my bloodwork was telling them nothing. Anyway, hope this helps you somewhat?

 

Do let us know how you make out...take care.


Sending good wishes your way!

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Hi Spero,

 

I'm not a doctor, in fact I have no medical training at all, so please bear that in mind when considering my input, okay? If I were you, I think I'd get some second opinions -- like from another endocrinologist, first of all. As I understand it, diabetes can cause all the symptoms you mention, including kidney failure, joint pain, GERD, gastroparesis and sclerodactyly. The interesting thing is that you describe an unusual situation of leathery peeling skin and a return to normal which doesn't sound scleroderma-like (as scleroderma hardens the tissues and then they typically stay that way permanently, perhaps with an eventual return to normal but not in a brief, intermittent fashion, coming and going like that) -- but here we go again, I do not even have a current first-aid certificate.

 

Are you also testing multiple times per day (as recommended by your doctor) or are they going only by your A1c? Eventually complications can arise even with good control of diabetes, but it could be that your endocrinologist doesn't have you on a strict enough monitoring program, so issues might be slipping through the cracks.

 

But see, here is the wonderful flip side of that: the second endocrinologist might agree with the first, that your complications are not caused by diabetes and could possibly be due to scleroderma. In that case, you'd have some real ammunition with your rheumatologist for urging more screening tests and/or a referral to a scleroderma expert.

 

Lacking that, though, it's possible you might be disappointed in an effort to move straight on to a scleroderma expert, especially because you've been there, done that, before. They will really want to be sure that everything else has been ruled out, this time around -- which is where the second endocrinology opinion (if it substantiates the first one) would be your ticket.

 

While you're at it, don't waste your time with just any ol' endocrinologist, either. Seek out a really terrific one so that their opinion is something you can believe in, they offer advice you can follow, and your other doctors can rely on, as well.


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.

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Hi everyone! As always, thanks for the helpful replies. I had to step back for a little while because I was focusing too much on the frustration I've had with doctors. I decided to start focusing more on the things I can change.

 

The issues I've had with chronic tendonitis in my ankles has now spread to both my knees and my elbow so the doctor said it would be a good idea to start some physical theorapy. The doctor also gave me a prescription that's helped a lot with the joint pain.

 

I went to see a dermatologist and she's running some more blood work. The adivce was the same thing I've been hearing for awhile now but had been unwilling to accept... she said autoimmune diseases can be extremely difficult to diagnose and unfortunately things will probably get worse before they get better. I think I'm finally starting to come to grips with that.

 

I hope everyone is doing well! You're in my thoughts.

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I went to a new doctor and they finally found the problem. I have a compressed spinal cord that's affecting the nerves in my skin, muscles and apparently some of my organs. I'm going to see a surgeon to see what can be done.

 

I just wanted to thank everyone for all the support and advice. Bless you!

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Hi Spero,

 

It must be a great relief to at last get a diagnosis, even though it sounds as if it's a very painful condition. :(

 

At least now hopefully something can be done to help you and make your life a lot easier. :)


Jo Frowde

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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Dear Spero,

 

Well, I suppose in a way that must be a relief, at least to have a diagnosis. But spinal surgery doesn't sound like much fun at all. Please let us know how things progress, as it might be awhile before you are good as new (if indeed that can be achieved.)

 

Here are some flowers, just for you.

 

:flowers:


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.

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