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#1 white gloves

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Posted 23 July 2008 - 05:52 PM

Hello, I have recently come across scleroderma info when reading about Sjogren's and thought I might find some answers here. I'm thinking (with a real sinking feeling) that maybe I have been suffering for years, though undiagnosed. Just got referred to a rheumatologist, appt in a month, not sure I can wait. I have had "vitiligo" for many years which has been spreading, I don't think its vitiligo anymore. Both of my hands are completely white, hence the name. I have suffered from stiff fingers and aching joints for well as long as I can remember, any my fingers look very different. Now the skin all over my body is changing and is quite different than it was a few years ago. The skin on my chest and back is similar to recent pics I have seen of sceleroderma. Of note is that for the past year I have suffered severe heartburn, difficulty swallowing, nausea, slow bowel motility (none responsive to colonscopy prep, yeah that was great), and of late the aching and pain in my joints legs and back is so severe as well as tingling that it freaks me out, though I am no stranger to pain, sometimes I wonder if I fall asleep, will I even wake up, sometimes I wonder if I want to wake up; unfortunately that is where by thinking has gone, and it's really not my style or nature. I have also sometimes have squeezing chest pains, and am out of breath after taking one flight (well prob 1.5) of stairs at work. Often the pain in my back is pinpointed and deep and brings me to tears. This sounds crazy but its all true. Do any of these symptoms sound familiar to anyone here? I stumbled on to this when reading about Sjogren's because I wanted to discuss that with my doctor, as I think I have been sufferering those symptoms. I also have Hashimotos, diagnosed about 15 years ago and am on synthroid. I am wondering if I have scleroderma. I don't want to wait one month to see the rheumatologist, though I have been suffering (in silence?) for quite some time, I feel beyond horrible. I m wondering if the rhuem is right doctor to see. Any input would be appreciated. Sorry to have rambled. WG

#2 Sheryl

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Posted 23 July 2008 - 06:22 PM

White gloves, welcome to our forums. Ask as many questions as you can regarding your health. If we are able to answer we will do are best to be informative. I am glad you are going to a rheumatologist. This doctor should be able to help you out with many of your symptoms. If he/she isn't knowledgeable on Systemic Sclerosis then try to find a rheumatologist who is. Sounds like you were ready to listen to your body and seek help. I hope your symptoms settle down. Write down everything and be prepared for your next doctor appointment. Each ailment, issue, or pain you have, mention it. Put them in order of severity. Keep us informed on how you are dealing with these issues.
Strength and Warmth,
Sheryl

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#3 smurfette

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Posted 23 July 2008 - 07:15 PM

I saw my internist first and he ordered blood tests and it showed a positive ANA (the antibody for scler) and then he sent me to a rheumatologist so the diagnosis was easy for the rheumatologist to make and then it was just a matter of which autoimmune/connective tissue disease and how to treat. If you have a family doctor or internist that you have a good rapport with and you can get to see them first and they will run the antibody test quickly maybe you can do what I did and have the results for the rheumatologist to interpret. Then you will have a leg up when you go and see your specialist and can possibly cut down on some time. You sound so miserable and uncomfortable the sooner you have some kind of diagnosis, the sooner you can treat and start to manage you illness.
Good luck and I hope you get some answers and comfort soon!
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#4 truman

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Posted 24 July 2008 - 12:31 AM

White Gloves:

First, don't get into panic mode.....you've had these symptoms for some time. Now you're putting them all together; we sometimes are the best advocate for ourselves when we listen to our bodies. The rheumatologist is the correct doctor. See if you can get in earlier and if not, the suggestion Smurfette made of having the Internist run the tests will save time until your appointment. The Internist can forward the results to the rheumatologist.

If CREST and/or Scleroderma is the diagnosis, it is what it is. With proper medications you will no doubt begin to feel quite a bit better. Some meds are trial and error, but basically there are many out there for our symptoms.

Call the rheumatologist today and see if you can move up your appointment, if anything, just to set your mind at ease. Let us know the outcome; we're here for you 24/7. :)
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It is what it is...........

#5 razz

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Posted 24 July 2008 - 02:23 AM

White Gloves,

Welcome to the forum! I hope you get answers to your questions soon. It sounds like you've been dealing with these symptoms for a long time. Getting a proper diagnosis and treatment will be a relief and you'll be feeling better mentally and physically about your situation. Keep us posted. We're here for you!



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#6 Peggy

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Posted 24 July 2008 - 05:26 AM

Welcome and I'm so sorry about what you are going through. I, like you, suffered for a year before I finally had a diagnosis. At the time my symptoms were so bad that I was going from one doctor to the next and one specialist to the next and one clinic to the next. The hardest part was staying focused and not giving up. Some of the doctors I think thought it was all in my head. I knew there was something going on so I kept on it.

If it is sclero the rheumatologist doctor is the doctor that will diagnose it. They can do that with blood work or they can also do a biopsy on an affected part of the skin. Once you have a diagnosis then you will then know how to proceed. This will depend on what type of sclero it is. If it's the systemic then you will have to work-ps done on your heart, lungs, kidneys, and gastro. I have lung development and gastro problems. I also had kidney/bladder trouble that was a result of a medicine I was taking but that has gotten better now that I'm off the med.

With sclero there are ups and downs all of the time. No two patients will have the same symptoms but they will be similar. I also have terrible muscle pain and extreme fatigue. You will find that alot of us have the fatigue. This disease has changed my life completely. The things I used to be able to do I can't anymore but that's just the way it is. You just have to learn to live with it.

This site is the place to go to for comfort, advice, and compassionate people. I don't know what I'd do without this site as when I have a question there is always someone who knows what I'm going through.

Good luck on your appointment and keep us posted. You also should have someone go with you to that appointment so you have another set of "ears" for any information the doctor throws at you. It can be very overwhelming.

Warm hugs,

Peggy

#7 Sweet

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Posted 24 July 2008 - 09:10 AM

Hi WG,

Welcome to the Sclero Forums. You've come to the right place to find people that are very familiar, and experiencing the same symptoms you are having. I can relate to each and every complaint you have. You've done the right thing in making an appointment with a rheumatologist. He/she will know just what test to perform to help get you answers. I'm not a doctor, but in light of the time you have been suffering with all of this, I think it would be OK to wait the month to see your Rheumatologists. However, if anything acute comes up, get in right away to you primary care provider.

I'll be anxiously awaiting a report after your rheumatologist appointment!
Warm and gentle hugs,

Pamela
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#8 smac0719

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Posted 24 July 2008 - 01:50 PM

White Gloves,

I really can't add anything that hasn't already been said. I just wanted to welcome you to the forum and I wish you the best with your upcoming visit. You will find a lot of information here about various auto immune disorders. Try not to let it overwhelm you. I felt that way at first and then took in the information in doses. I was better able to process it that way. Keep us posted.
I may have Scleroderma, but Scleroderma doesn't have me!

#9 Nina

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Posted 24 July 2008 - 02:22 PM

Welcome White Gloves! So glad you have decided to join us here on the Sclero forums. Take you time and chat with anyone you feel comfy with, there is lots and lots of knowledge here and lots and lots of support.
You have taken the right steps, now you must try to relax and think positive. I have been ill for more than eight years with no diagnosis, this can be very frustrating. But I must say, having this forum to come to makes things a LOT easier.
Feel you way around and read some of the older posts just to get familiar with our members. This is a wonderful place to be ~
Much love,
Nina

#10 Snowbird

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Posted 24 July 2008 - 02:54 PM

Hi White Gloves

I can't really add anymore to what the others have said either. Just wanted to welcome you too. Yes, a rheumatologist is the right place to go, they specialize in all kinds of autoimmune diseases. These rare things that take so long to diagnose can sometimes be overlapping diseases which is what makes them hard to define, hence ages to diagnose. Keep asking all your questions...there is always someone here who can help. I hope you keep us updated on how your doctor appointments go. Reading everything on the net can be dangerous...as in too scary :o , been there, done that...not going back....this is good place for factual information. Take care.
Sending good wishes your way!

#11 white gloves

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Posted 25 July 2008 - 08:14 PM

Hi there,

I want to thank Sheryl for the quick response to my post the other night, it helped calm me down to see such a prompt response, and thanks to all who replied, definitely a source of comfort during a rough time; I really appreciate it.

I called the rheumatologist office and appt moved up from Sept 9 to Aug 15, I asked that I still be on waiting list for canceled appts and will call once or twice a week ("squeaky wheel"). I will get into my primary doctor next week (he's not in until WED) and ask him to run blood work so I can take those results to rheumatologist. Thanks again for the understanding, I will advise the outcome of my rheumatologist appt.

Nighttime is particularly tough without any immediate distractions (such as work), so difficult to relax and sleep...

Thank you, thank you, thank you all again so much!

WG

#12 smac0719

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Posted 26 July 2008 - 04:49 AM

WG,

I'm glad to hear the posts helped. As mentioned earlier you can find a wealth of information here and much support. Don't hesitate to post if you find yourself needing to vent and release. Hopefully the rhuemo will be able to get you in even sooner.
I may have Scleroderma, but Scleroderma doesn't have me!

#13 Sheryl

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Posted 26 July 2008 - 08:17 AM

White Gloves, I am glad your appointment was moved up for you. Your bloodwork can be all negative and you "could" still have Scleroderma. My blood work has always been negative except when I am in a flare. Your Rheumatologist will be able to tell from all your previous diagnosis' and your skin symptoms especially the area around the chest. Sclero70 is one of the blood tests my family doctor used to see if I was in a flare at a given point in my disease. I am glad you are busy researching this illness just in case. You will at least have some knowledge going into your visit that you won't be shocked if the name comes across your doctors lips. You will be able to talk wisely and learn on your first visit. Keep us informed on how you are doing. Many of us are up all hours of the day and night. I am glad I happened to be awake the other night to respond to you. You have joined a great group of people. Many of us have some or all of the problems that you are going through. I never had the sharp pinpoint pains in my back. I get them in a couple areas of my hip/buttocks and my lower and upper calves but not in my back.
Strength and Warmth,
Sheryl

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