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Scleroderma or Diabetes


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#1 spero

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Posted 17 August 2010 - 06:36 AM

Hey Guys, I'm new to the site and just wanted to let you know how I got here :) I started getting really sick about two years now and my endochrinologist told me that my symptoms sound like I might have an autoimmune disease. Most of the first symptoms were severe fatigue and joint pain and I think it was too vague for the doctors because they seemed clueless about what the problem might be. I usually just got the "excersise and eat healthy foods" advice.

But things have started becoming much more specific in the last six months. My Rheumatologist said it's from diabetes and my endochrinologist said no way.

The first thing was Kidney Disease. I've never had any signs of Kidney disease and now I constantly have signs of an active disease on every one of my tests for the last six months.

Then about 2 months ago I was diagnosed with arthritis in my spine. I've had MRI's in the past and there was never any mention of something like this. The doctor said it's unusual to see this at my age but didn't have any ideas other than to just monitor it.

I also started having lots of problems with thickening skin on my hands and feet. I used to get this once or twice a year and it would go away after a few weeks. But recently it's become a constant cycle where the tips of my fingers and toes become like leather and eventually it peels off but now it's become a constant cycle. It's become bad enough that I can't straighten my fingers and even making a fist has become really difficult... it feels like my arms become really weak after making a fist - it's a really strange feeling. Anyway, my Rheumatologist said it's from diabetes but my endochrinologist said it wouldn't be associated with the joint problems and stiffness that I have throughout my body.

So now I'm off to see a dermatologist since neither of my other doctors can agree about what's responsible for my current symptoms. I've read a few things about how difficult it can be to make a diagnosis between the two but hopefully the dermatologist can give me another opinion on this.

Has anyone here been diagnosed with both Scleroderma and Diabetes? Are dermatologists able to diagnose Scleroderma or does that need to come from the rheumatologist?

Sorry for the long post. It took me a while to get here.

#2 spero

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Posted 17 August 2010 - 09:58 AM

I forgot to mention that I've also been recently diagnosed with GERD, Gastoparesis, IBS and chronic tendonitis but none of that seemed substantial until now. I've also had Raynauds ever since I was a teenager but I never knew what it was until I started looking into the autoimmune stuff... there were times when I would almost get frost bite from swimming in 70 degree water in the summer... my primary care physician at the time never knew what it was.

Thanks for reading :)

#3 Kamlesh

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Posted 17 August 2010 - 10:28 AM

Diabetes is easy to diagnose (blood and urine tests including A1C test). If you are diabetic, you need to control your diabetes. Most of your symptoms sound like some type of auto immune disease (bearing in mind I'm not qualified to offer a diagnosis). Maybe you need second opinion from Rheumatologists or better visit some good hospital such as UCSF, John Hopkins, etc.
Kind regards,

Kamlesh


#4 spero

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Posted 17 August 2010 - 10:45 AM

Hi Kamlesh. Sorry it was probably confusing the way I wrote it. I've had type-1 diabetes for 10 years now but one of the long term side effects of uncontrolled diabetes is something called diabetic sclerodactyly, which looks very similar to scleroderma. My endochrinologist doesn't think it's from diabetic sclerodactyly because I've always had my diabetes in very tight control (A1C's are always in the 5-6 range). She also said it wouldn't affect my joints and organs like this if it was from diabetic sclerodactyly.

#5 Jeannie McClelland

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Posted 17 August 2010 - 11:05 AM

Hi Spero,

Welcome to the Forum. As it happens (:)), we have a page on Scleroderma and Diabetes that might offer some insight. I would think that a rheumatologist specializing in scleroderma might be your best bet for achieving a proper diagnosis and treatment. We have a list of the Scleroderma Clinical Trials Consortium members here. With signs of active kidney problems, are you at least being seen by a kidney specialist for that? Boy, I wouldn't want to mess around and risk kidney failure.

I believe we have a number of members with both scleroderma and diabetes, so I imagine some of them will chime in too.

In the meantime, welcome to the Forum once again! I hope your doctors can reach agreement sooner rather than later. Please post often and let us know how you are getting on.

Best wishes,
Jeannie McClelland
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#6 Sheryl

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Posted 17 August 2010 - 11:10 AM

Spero, welcome to the ISN forums. You asked if anyone else has your diagnosis. I have both Diabetes and Scleroderma. I was diagnosed with Scleroderma first then 3 years later with Type 2 Diabetes. I was quite thin and now I am in a different weight category. I too try to keep the diabetes numbers down under 6 if possible. I also suffer from Raynauds, IBS, and Gerd, along with a few other issues. You very possibly could have both illness' and that is why it is taking awhile for you doctors to make the diagnosis for you. Some of our friends here still don't have a diagnosis. Others it took upwards towards 10 years for their diagnosis. Hang in there and treat each illness as it come along. Soon all the details will fall into place and you will know for sure what to call your disease.
Strength and Warmth,
Sheryl

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#7 spero

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Posted 17 August 2010 - 11:42 AM

Hi Jeannie, yes I've been seeing a Kidney specialist but he still isn't quite sure what's causing it. He said I might need a biopsy if things keep getting worse but he won't recommend it right now because of the risks. It stinks because I'm also worried about the risk that will keep causing more damage, which it has been for the last six months. I just keep hoping that everything will work out.

Thanks for the links. I'm thinking about printing them for my next appointment.

#8 Jeannie McClelland

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Posted 17 August 2010 - 12:04 PM

Spero, you should have seen the big fat notebook of print-outs I made for my general practitioner! I don't know if he ever read it or not, but at least he had the opportunity to learn. ;)

I think print-outs and lists are great for marshaling both your thoughts and your arguments. I sometimes think I must have looked like a noddy-doll during appointments: brainlessly nodding away, forgetting every question and every symptom. Live and learn or is it learn and live? :lol:

When do you see the doctors next?
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#9 spero

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Posted 17 August 2010 - 12:42 PM

Yeah, I've run into some issues bringing stuff to my appointments. It seems like doctors either like it or they hate it. My Rheumatologist hates to be questioned so I'll need some luck on my side for that one.

I have an appt with the Rheumatologist next week but he just wants to see how the new Fibromyalgia drug is working. I had my ANA tested (for Lupus) by a different doctor last year and now this guy keeps telling me there's no reason to re-test. They're just treating me for what they called "Fibromyalgia like symptoms". It's funny because they gave me the test for FM (trigger points) and it was ruled out but they still gave me a prescription for it. On the flip side, I've never even had a specific Scleroderma test and they don't think it's necessary.... they'd rather give me prescriptions for something that I don't have.

#10 Jeannie McClelland

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Posted 17 August 2010 - 01:14 PM

Do you hear the rousing chorus of "Been there, done that, got the T-shirt!"? I don't know what your rheumatologist has prescribed for fibromyalgia, but some of the same drugs are being used for pain caused by other things, so maybe this is part of a wait and see what develops strategy. That one is pretty familiar to most of us.

There isn't really a specific scleroderma test that can say 100% for sure that's what you've got and that is part of what makes it so difficult to diagnose. There are a couple of antibodies that can point in that direction, but a positive on those doesn't alone warrant a diagnosis of scleroderma. It's all clinical symptoms and it's not real common to turn up with enough of them right away to get a positive diagnosis either. In fact, it usually takes about six immensely frustrating years to get a firm diagnosis and by then it is such a relief to know at last that even quadruplescleropusimania would sound good. :lol:

I was told by the general practitioner I gave the information to that I couldn't have scleroderma because I had no skin thickening~ Now I just keep harping on if there is something I think is going on that a doctor is ignoring. Eventually they'll give in and run a test just to shut me up, I think, and so far I have been right most of the time and they have decided maybe I'm not a roaring hypochondriac (another common pre-diagnosis diagnosis, if you follow me). You absolutely must be your own best advocate and if a doctor isn't willing to partner with you in your care, hmmm, well, if it were me, I'd look for another doctor. (Might be something to do with my red hair!)

Persevere!
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#11 enjoytheride

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Posted 17 August 2010 - 04:18 PM

Boy I hate that tennis game where the doctors whack you back and forth to each other. I agree that it sounds like it's time to head off to a specialist in a larger institution- there are lists of these.
Good luck. Have the doctors that you've seen told you why they think your condition is not in their specialty? Do they talk to each other? If not, will your primary help to get information for you?

#12 spero

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Posted 18 August 2010 - 03:45 AM

Thanks for all the helpful replies.

etr, your post sums things up pretty well. I've been doing everything I can to find a good doctor but I've been bounced between specialists for too long now. Many of them work in the same medical building but they don't work together on my diagnosis. I've lost two primary care physician's so far, one of them said I've become too complex for them and the other told me he doesn't have any other ideas.

I actually went to one of the specialists listed on this site. It may have been too early in the process because I only had the fatigue and joint issues at that time. I've been thinking about going back to see him again but doctors can say some pretty offensive things when they don't have an answer for you. I guess it's just water under the bridge at this point but it's not really something I wanted to go back to.

#13 spero

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Posted 18 August 2010 - 06:45 AM

Okay, so I called the specialist listed on the site and asked if I could come back to see him again because of all the new health problems since my last visit. The secretary said there was no reason to come back because he doesn't treat kidney disease, arthritis or skin problems. I told her my doctor thinks it might be from an autoimmune disorder and she said that doctor would need to write a referral for me. I have PPO health insurance so I have no idea why they would need a referral. I guess they just don't wanna bother with it.

I guess I'm starting over again. I don't even know where to start. I don't even care where my next doctor got there medical degree or anything like that.... I just need to find a doctor that will standby me through this.

#14 Jeannie McClelland

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Posted 18 August 2010 - 08:06 AM

Well, that's not helpful.:angry:

I would try contacting the hospital connected with your university's School of Medicine. They might be able to give you a list of suitable doctors who are accepting patients. Your nephrologist might also be willing to make a referral.

Although your insurance plan may not required a referral, many doctors do in order to manage their case loads efficiently. A referral is a good screening tool because it is (usually) a safe assumption that the referring doctor has done all the basic legwork first. It's not feasible for specialists to see everyone who wants to see them, unfortunately. Since scleroderma has so many symptoms in common with other illnesses, I guess it is not unreasonable for a sclero expert to want to be sure all the other things are ruled out first.

Good luck!
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#15 miocean

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Posted 18 August 2010 - 03:52 PM

My scleroderma specialist will not see you unless you have been diagnosed with scleroderma. Maybe that is the reason yours wants the referral. I have many doctors, as we all do, and they don't confer with each other. My nephrologist has contacted my transplant neph about my Prograf level and he agreed that the protocol was what he would follow. I am beyond my Primary Care Physician. He is great at common things and giving prescriptions but is way too busy to coordinate my care and knows very little about sclero, thankfully I don't need referrals.

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#16 enjoytheride

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Posted 19 August 2010 - 05:20 PM

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.

#17 Snowbird

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Posted 20 August 2010 - 03:02 PM

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!

#18 Shelley Ensz

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Posted 20 August 2010 - 03:22 PM

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
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#19 spero

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Posted 01 September 2010 - 02:45 AM

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.

#20 Shelley Ensz

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Posted 08 September 2010 - 06:14 AM

Hi Spero,

Have you gotten any results yet from the blood tests your dermatologist ran?
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.