Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


New member

  • Please log in to reply
13 replies to this topic

#1 Little Red

Little Red


  • Members
  • Pip
  • 9 posts

Posted 31 October 2008 - 02:28 PM

I'm a new member. :)

I was diagnosed about 4 years ago with scleroderma with a biopsy. I have morphea, linear, ?? Raynaud’s, Sjogren's, had my throat stretched twice, also have diabetes. I know if I were a horse “they” would just shoot me. I've had it at least 2 years before my diagnosis.

Does anyone else out there have diabetes also, if so do you have problems controlling glucose levels?

:o Not looking forward to the winter months, last year was the "coldest" winter I've ever experienced! I used my electric blanket into June. (Use it just to warm the bed up/when I pop in turn it off) has made such a difference.

I live in the Reading, PA area, am married husband math teacher at the local high school, have a son (21) daughter (19) both in college. I work in an optometric office.

I am very frustrated seems I come away from doctor appointments with more questions than answers. The part that bothers me the most is they don’t want to know about scleroderma or how to treat it. So tells me I’m not important enough for them to research either or both. Such as I asked my endocrinologist if she sees patients with scleroderma & diabetes her answer was “I only have two people in my practice withscleroderma, so I don’t know?)

Thanks for reading,

Little Red

#2 epasen


    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 31 October 2008 - 10:08 PM

Hi Little Red,

Welcome on board! :) Sorry to hear that you have to deal with such problems.. I hope we can help you in many ways in the future.

I also feel so very often that when I go to the doctor's office I'm the one being doctor there.. Doctors know nothing about this here in Finland, and usually I have to tell them how I should be treated.

I know how you feel about that Raynaud's phenomenon, since Finland is pretty north and it gets cold here in winter. I'm really having problems if I just step outside, from September through the May. Summers are sometimes bit easier.

Anyways, it's good to have you here.
Take care,

#3 MaryFanPhilly


    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts
  • Location:Central California

Posted 01 November 2008 - 01:31 AM

Welcome Little Red,
Sorry to hear of your problems. Sadly it's something most of us have to deal with. I also have diabetes, not only do I have a family history but I have been on steroids for several years now which contributed to the onset of the diabetes, which is two years now.
I was recommended to my endo office from the rheumatologist, and their offices happen to be on the same floor of the office building, so it is very useful that they have a close relationship and share several (not many) sclero patients. I am fortunate that in Philadelphia there is a sclero center; it isn't too far away from Reading, you may want to consider a trip. You can send me a private message if you want more info.
I find that most doctors tend to focus more on the diabetes and its consequences; these are two complicated diseases and the interactions between symptoms, meds, complications etc is almost overwhelming. I trust my rheumatologist to act as 'quarterback' and coordinate all my other care, and he is savvy enough to defer to the other specialists when necessary. My primary is a good guy, but he is way out of his league with my case, as would be most.
Between them they keep very close watch on the A1c, blood glucose levels (I take it twice daily and bring a log with me to my appointments) and cholesterol levels. With taking steroids it is very difficult for me to keep my glucose levels low, no matter what my diet is. I was on insulin shots for a year or so and am soooo glad to be done with that.
Yes this is frustrating. It's annoying, disheartening and sometimes depressing. No getting around that. Winter is particularly tough for most of us. I've been hoping to get away from the east coast and into warmer climates, but I have a son who has two more years of college... then I'm outta here!
The good thing is you have a tremendous resource here, in the forum. You'll get more support and information from all of us than you will anywhere else.
Good luck to you and we hope to see more of you!
love, Mary in Philly (YAY PHILLIES!)
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#4 Sheryl


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 01 November 2008 - 02:31 AM

Welcome to the ISN forums Little Red. We are glad you have joined our ranks. I am in the pre-diabetes phase. I have many of the symptoms though not severe enough to be considered full diabetes. I have made several life changes in my daily eating habits. I go for more testing in December to see what is going on. There is no one in my family with daibetes as of yet. I don't know if Asthma medications such as inhalers would be a cause of diabetes or not. Other than inhalers I don't take steriods. I am in the learning phase when it comes to diabetes. There are several members with morphea in our group and many newly diagnosed with sjogren's. Read and ask questions. We are learning from each other. Keeping fears at bay by helping each other with things the doctors don't take the time to discuss with us.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 01 November 2008 - 02:50 PM

Hello Little Red

You're right if any of us were a horse they'd shoot us dead for a dirty dog and then send us off to the glue factory! :lol:

Good thing then that you're a valuable and valued human being, you're now allowed to carry on until body parts start spontaneously falling off. :huh:

I have no experience of diabetes only scleroderma so others will post with info specific to your requirements.

Glad you've found us and take care and look forward to future posts. :D

Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 smac0719


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 377 posts
  • Location:Tampa, FL

Posted 02 November 2008 - 08:48 AM

Hi Little Red. I have been diagnosed with everything you have except I have not had to have my throat stretched. I have been diagnosed for 2 years, but also went 2 years trying to be disagnosed. I am diagnosed as diabetic, but I have not been on medication for it for over a year. I no longer check my levels daily, but I do have an A1C check every 3 months and my primary checks my levels when I have an appt.

When I was in the process of trying to control my numbers, I did modify my eating habits and taken a low dose prescription for a while. My numbers were never over 200 and rarely over 150 unless I was on steroids, which I took a fews times for asthma. Eliminating as many sugars as possible (natural and artificial) as well as monitoring the carbs did help tremendously. I also have PCOS so my personal thought is the diabetes stemmed from that. That's my thought and I'm sticking with it. :lol:

I am sorry you have physicians who don't seem to be interested in your condition or care. If that is the case, they may not be too aggressive in trying to treat it so I would look for other doctors. I have been through my share and kept looking until I found the ones that worked with each other and for my benefit.

Best wishes and keep us posted.
I may have Scleroderma, but Scleroderma doesn't have me!

#7 Nina


    Silver Member

  • Members
  • PipPipPipPip
  • 125 posts
  • Location:Claymnont, DE

Posted 02 November 2008 - 01:43 PM

Hello Little Red and Welcome Aboard!
You have found the one and only place you will ever need when feeling frustrated, angry, sad, in pain, or any other feeling. There will always be someone here to listen to you and most times, many ~
I do not have diabetes, I think that may be the one thing that I do not have. I feel very much like a horse today ~ I've been down and out for two days now. Completely wiped out and not feeling much like anything real...
SO GLAD you have found this wonderful forum and in time you will feel very much at home and in touch with some of the most thoughtful, sincere, caring individuals anywhere to be found.
Much love,
Nina (DE)

#8 canon


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 02 November 2008 - 02:06 PM

Welcome Little Red,

Sorry to hear you are having a tough time with the doctors. Will keep you in my thoughts in hopes you will find a caring one soon. I think scleroderma and those of us that have it make doctors uncomfortable. The treatments for it trickle down from other autoimmune diseases which are not well understood either. It's kind of a patchwork medicine in that there seems to be so many diseases in one disease so they treat each one as it manifests itself I guess. I do not have diabetes but wanted to say hello and welcome.

With gentle thoughts.

A happy heart is good medicine.

#9 Little Red

Little Red


  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 02 November 2008 - 05:31 PM

Thanks to everyone that replied, it means so much knowing I'm not alone. :)

I have an appt with my rheuo doctor tomorrow I'm hoping for some insights, but not hoping too much.

Well thanks again,

Little Red

#10 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 02 November 2008 - 10:16 PM

Hi, Little Red - great name. I'd also like to add my welcome to the ISN Forums. I look forward to hearing what your doctor has to say and hope that the comments other members have made will help you ask the right questions.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#11 razz


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 03 November 2008 - 08:26 AM

Welcome Little Red!

I am glad you found us! I don't like the cold winters any more either. I was usually the one taking my kids out to the highest hills with our round discs slathered with vaseline ready to come down like rockets off those hills. Now I shudder at the thought of snow and ice.(((( :blink: )))) And you're right thank goodness we're not farm animals, I would be gone for sure!

It seems like we all have experienced the difference between a good doctor and a mediocre doctor. One who cares and one who's indifferent. One who's informed and one who thinks he knows enough. After encountering these attitudes, we either keep our doctor or run away as far as our legs can take us. If a doctor gets annoyed by my questions or treats me like a fussy child than he's not worth my time neither.

I hope you're feeling good and, I wanted to say "Welcome!"

Live well, Laugh often, Love much

#12 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,263 posts
  • Location:Minnesota

Posted 03 November 2008 - 10:15 AM

Welcome, Little Red. I'm very glad you found us!
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.

#13 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 03 November 2008 - 12:13 PM

Hi Little Red

I'm a little late chiming in...but also wanted to welcome you to the club. Sorry to hear you are having such a difficult time with doctors...but I'm sure you've already learned from most here that the answer is to keep looking for one you connect with and are satisfied with. This is a great forum for support and good advice. Keep posting! :)
Sending good wishes your way!

#14 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 09 November 2008 - 04:08 AM

Hey Little Red,

Welcome to the Sclero Forums. It looks like you've received some great advice and support so far, so I'll just give you a big warm welcome!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)