KayBear

Crest Diagnosis

16 posts in this topic

I am 33 and just tested positive for crest syndrome in my bloodwork I have been reading and getting more and more scared. I don't seem to have any noticable skin problems; my finger and toes are cold alot but with no discoloration. I do have heartburn a lot and am on meds it seems to control it good. I have some red patches on my upper cheek bones I always just thought it was being flushed I never thought it could be something more. Are all the things I am reading going to happen or can it be mild and never get any worse and can you have crest and never show signs of the disease? Please someone help settle my fears, I cannot get into the rheumatoid doctor for 5 months. I do not want to be this scared for the next 5 months. Thanks Kaybear


THINK POSITIVE KAYBEAR

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Welcome to our group Kaybear. Everyone seems to get very worked up when they first hear about having this disease. Everyone is different in how scleroderma affects them. The doctors only prescribe medications as things change or develop. Even if you wait 5 months to see your rheumatologist nothing will likely change right away except for the tests that will be given to you after that checkup. If you are being treated for your reflux and that is what is bothering you at the moment then that is awesome. Your case can be mild to severe over a peroid of many years. If you have limited scleroderma then it is more internal. If you have Diffuse then it is more external. Crest can happen in both groups of people. I have limited and no major outward appearances of anything being wrong. I have known for over 4 years. Read and educate yourself but think positive. Exercise as often and as much as you can while you are feeling great. Exercise fingers, mouth, lips and tone all muscles. Knowing about the disease can help you ask educated questions to your doctors. Make a list of anything that changes with you over the next several months. A few days before check that list and see how important they are and ask by importance. Don't hide how you are feeling. I'm sorry we are getting so many new members. I wish there was a way to stop this disease in its tracks. Soon! Great strides are being made. Ask away. We will try to ease your thoughts. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Kaybear:

 

Calm down. I am diagnosed with CREST. I am one step short of Scleroderma. Yes it can be mild and it can be limited....that's me! It's limited to my right arm between the elbow and wrist. I get the painful calcium deposits, Raynauds, red blotches and the other symptoms the E and S stand for.

 

Word of caution; While you can count your blessings on being mild, constantly watch out for the Raynauds. Week after next, I'll be having an amputation of half of my large toe. This was due to an ulcer out of control. Actually, last two days It feels mildly normal, yet looking at it during dressing change today tells me it may be the entire toe (sorta of calm before the storm).

 

First diagnosis and the words are extremely frightening, but take it from a mild case, count your blessings and just deal with the minor things. In time, they'll actually seem normal.

 

Welcome to the site, and be assured you have many caring and loving people here who share your fears as well.


Tru

 

It is what it is...........

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Kaybear:

 

I'm sorry, but it caught me at the last minute..........

 

Red blotches on your cheek bones? Has your doctor tested you for Lupus?

 

I am by far no doctor and somewhat pretty new to the whole concept of my condition, but generally CREST and Scleroderma are related to an auto immune disease.


Tru

 

It is what it is...........

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Thank you to those that replied I don't feel quite as nervous; it's reassuring to know that others are going through this too. It makes it easier to face knowing that there is support out there and people to help answer the unknown for now, we will wait to see what the future brings. After seeing the initial websites I figured life was over but thank you all for your reassurance. CREST can be managed and liveable; the doctors paint a different picture. Thank you all Kaybear


THINK POSITIVE KAYBEAR

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Hello Kaybear!

 

Big ole hug for you today! Welcome to the Sclero Forums. I'm sorry that you have CREST, but as you can see you've come to the right place. I also have CREST. Diagnosed almost 8 years ago now. My disease really has not progressed much since then. And they think I had it about 3 years before I was actually diagnosed, so try not to fret over the fact that you can't see the rheumatologist right away. It will give you time to search our site, ask questions, and be more prepared when you do see him/her.

 

Again, Welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Kaybear...chill out girl!

 

I have crest too and for someone who said "I'm one step short of scleroderma" That's not quite right. CREST IS scleroderma. It's an old outdated term not in much use anymore. The red blotches are called teleganesticias (I CANNOT spell or pronounce it). They are the "T" in crest. Once you get to the Rhumey, (and frankly 5 months is WAAAYYYY too long to wait, find another doctor!!) he/she will tell you if you have limited or diffuse. Read as much as you can on this site and others, you're fear will subside some.

 

Many many types of scleroderma do NOT progress! The doctor told me that since I had Raynaud's as a presenting symptom over 10 years ago, and so far no organ involvement, it was unlikely to progress. Usually if it's going to get bad, it does so fast, in the first two years, that's my understanding. Even so, there are lots of medications to minimize the complications. It is not a death sentence. Painful at times, YES. Scary, YES. Be informed. Learn all you can. Get an exellent doctor. take good care of yourself, be selfish and put your health first. Good luck and welcome,

Peace,

karen

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Hi, Kay, and a big welcome hug to you. I am so glad you found us. I agree with Karen's advice completely. It's worth reading again. I look forward to getting to know you better.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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thank you all so much I m starting to calm down now the more I research it seems as though mine might bevery minimal I don not that I can see have any skin involvement,i do have the heartburn and some circulation problems but that could be due to my diabetes my doctor seems to think mine is all in my veins and blood vessels if that is possible the hard part is I am stressing myself out thinking the worst and dwelling on the could be's now that it is starting to make more sense I am starting slowly to adjust thank you all so much again I will definitley be more at ease the more I find out and learn and hearing from all of you that it is livable and not a death sentence as the doctors have made it sound sorry for the typing I can only do so much I found out at 26 that I am going blind due to a genetic disorder and my eyes tire quick so I don't spend alot of time with capitals and punctuatiion thank you again


THINK POSITIVE KAYBEAR

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Having been diagnosed with CREST, it was my rheumatologist who stated that my ANA levels did not warrant Scleroderma. I will have to recheck with him next week, as per a recent post here saying CREST is Scleroderma.


Tru

 

It is what it is...........

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Well I was going to tell you but everyone here has already said what I would say to you. take care, sam


Sam

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KayBear,
As you've already seen - you found a great support group. Lots of great people in various stages of scleroderma, but all great attitude and outlooks. I noticed that you mentioned that you have done some research on CREST. Just in case you missed it, here is our page on CREST, a form of systemic scleroderma. It only takes two of the CREST for a diagnosis and sometimes that all people ever develop. Just always be aware of how you feel and what's happen, but most importantly - always enjoy life!

Positive thoughts and big hugs to you,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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There you have it, Kaybear (Your name is perfect, BTW)!

 

Not only are there great resources here, due to first-hand experience, but numerous links to comb over and review later on. I have learned so much since I've been a member here, due to all of the great folks and information you will also find here.

 

If you find yourself becoming overwhelmed every so often, it might help to do as I found I had to do... backing away a bit... taking a break.

 

Most important... be good to yourself and take care.

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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THANK YOU ALL!!!!!!!!!!!

since finding out about my diagnosis last week last night was the first night I actually slept all of your support and advice has really helped to understand and deal with this.I am grateful for all your help I go to the doctor monday and I actually feel like I can face her and not blame her for finding it.Up until finding this support group and all of you great people I was thinking IGNORANCE WAS BLISS now I am looking at it from the point of view that I can catch the little things and know how to face it and hopefully keep it from getting worse due to my lifestyle now I see that it is a wake up call to change and accept, what I can and due all I can for myself.AND ACCEPT WHAT I CAN'T CHANGE I CAN'T CONTROL EVERYTHING.be talking with you all later. :D :P


THINK POSITIVE KAYBEAR

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