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New to Sclero (CREST)


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#1 mona

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Posted 02 April 2009 - 10:19 AM

Hi Everyone,

I have been reading the forum for a while and decided it was time to post. I have been trying to learn as much as possible about scleroderma and CREST. Here is my story: In 2007, I noticed I had a raised bumpy rash (not red) over my hands and that my fingers looked swollen and shiny. I went to see my family doctor who did a biopsy and it came back "granuloma anulare" which is a benign condition, so I am told. She referred me to a dermatologist who prescribed topical steroids and wanted to basically wait and see.

Months later, I went back to him and he decided at this point that the condition was not only related to granuloma anulare and sent me for labs. All of the labs returned normal including ANA , sclero and lymes. He then suggested I see a rheumatologist. I made an appointment (took three months to get one) which I had today.

The rash has gotten worse and the fingers have as well. I now have calcinosis on my nose (suspected calcinosis) and red rash with thickening skin on my lower legs. When I saw the rheumatologist today she said that even though the blood work was normal she wants me to have another biopsy, PFT's, CXR and barium swallow because I do have what sounds like dysphagia. I say sounds like because while I don't feel like I have trouble swallowing I definitely feel something is not right when I do. Kind of like a lump in my throat type of feeling which I always associated with post nasal drip up to this point in time.

Anyway, sorry to go on but I am trying to sort this whole thing out. I really expected the Dr. to dismiss my concerns about scleroderma but she did not and it seems like she is highly suspicious that this is what I have. She mentioned CREST and seems to be thinking along those lines. She took just about an hour with me and I was impressed. She also told me that she did not need to see me again until after I have had the biopsy. The Dr. was great and did not make me feel like a "worry wart". She was very respectful but did tell me to not be anxious which is easier said than done.

Hopefully some of you can relate to my situation which would make me feel a little less isolated with this condition.

Thanks for listening and a big thanks to all of you who contribute to this forum.

Mona

#2 Jeannie McClelland

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Posted 02 April 2009 - 12:09 PM

Hi Mona,

Welcome to the Forum! We can certainly relate and you are definitely no longer alone. You've just gained the biggest bunch of new sympathetic and totally understanding friends possible. It's just a shame you needed to find us, but I'm glad you did.

It sounds like you have been uncommonly lucky to have found a great rheumatologist on the first time at bat! She sounds like she is knowledgeable and careful, as well as being a nice person. The results of the tests she's ordered should help make for a better diagnosis.

Have you read much about CREST? We have a great page full of information. Of course, I'm not a doctor and you shouldn't take anything I say as anything more than an informed patient's opinion, but the rash you describe and the diagnosis of granuloma annulare sounds a bit like another form of scleroderma called Morphea. If I'm wrong, please somebody, jump in and tell me!

The period between a maybe diagnosis and a positive diagnosis is really rough and so is that period right after you do get the 'word'. I'd bet, oh, a pair of warm and woolly socks, that every last one of us on the Forum has scared ourself silly and gone into total information overload about that point. I sure did! So, um, don't be a worry wart! :lol:

Getting that biopsy organized will shorten the waiting period, as will scheduling the other tests she wants. You could go ahead and make an appointment with your rheumatologist just as soon as you know when you'll be having the tests, too. (Guess who causes schedulers to run screaming down the hallways!) You'll let us know how you get on, won't you?

Best wishes and a warm welcome,
Jeannie McClelland
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#3 Honey

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Posted 02 April 2009 - 04:43 PM

Hello, Mona.

You are not alone. I was diagnosed with scleroderma in January. I have been trying to learn as much as I can, also, and you will find wonderful encouragement and information here.

I am sorry that you are having to live with this condition, however, with support from friends, family and worship, I know I have been given liberty to be thankful each new day.

The more you can educate yourself, the better the relationship you will have with your medical professionals. I am hoping you will receive your correct diagnosis soon.

Kindest regards,
HONEY

#4 janey

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Posted 03 April 2009 - 04:55 AM

Hey Mona,
I would like to join the others in welcoming you to the ISN forums. It sounds like you've done a lot of research already, but I think you'll find more good stuff on the links that Jeannie provided.

It's great that you've found such a thorough rheumatologist right off the bat. Sounds like with all the tests she's having you do that she is definitely working in your behalf and wants to find out what's going on. With that respect, please consider yourself lucky. So many people get blown off with this disease which is why it sometimes takes a very long time between initial visit and diagnosis, sometimes are long as 5 years! Looks like you'll have some kind of diagnosis with all the tests being run. There are so many autoimmune diseases out there that it's hard to sort through them all.

The tests you are having done are some of the same ones I had done during year one. It's best to have as many tests done as possible so you can get some baselines and find out what is and what isn't happening. So hang in there girl! Get those tests scheduled as soon as possible. Please let us know what you find out.

Again welcome!

Big Hugs
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#5 Penny

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Posted 03 April 2009 - 08:08 AM

Mona,

I am sorry that you are going trough all of this but glad that you have found this wonderful site and forum. The staff here is probably the nicest group of people I have ever had the honor and privilege to come across and the members of this forum are downright amazing!

I want to welcome you, and give you a friendly warning that hugs and laughter tend to be contagious here, it is not uncommon to find yourself in the middle of a spontaneous group hug then spy out of the corner of your eye a conga line dancing past (Jeannie has a great Carmen Miranda hat by the way) as members celebrate good news with each other.

I hope that you get some of the answers you need soon and are quickly on the path to the right treatment.

Warm hugs,
Penny

#6 debonair susie

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Posted 03 April 2009 - 11:18 AM

Hi Mona,

I join the others in welcoming you to the forum. As you can see, you've heard from some of our many special folks right here on this very thread!

I'm also happy to read of your good fortune with a compassionate and all-around great rheumatologist.

Jeannie gave some good suggestions, one being to schedule your rheumatologist appointment as soon as you have dates for your other procedure(s).

You never need apologize for the process of sorting this out -- you are welcome to do so here any time you like. After all, that's what we're here for! We support one another, due to the common threads weaving through our lives, those being our health issues.

Please keep us posted on how things are going?
Special Hugs,

Susie Kraft
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#7 mona

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Posted 04 April 2009 - 01:27 AM

Wow, you are all so wonderful. Thank you for the warm welcome! I am trying my best to sort this all out but as some of you have mentioned this can be a very difficult condition to diagnose. Curiously enough, I am not sure if I an hoping for a definitive diagnosis or not. On one hand it is good to know, on the other hand knowing will mean I have scleroderma. Does that even make sense?

I will heed the advice of scheduling my appointment early for the rheumatologist. I should certainly know better than to wait. As it was, I had to wait two months to get my initial appointment with her. I am also a breast cancer survivor, diagnosed at 36 years old, who has a a ton of experience scheduling doctors' appointments and tests and procedures. Of course, that experience traumatized me and I'd rather not go down the same path but I will do what I need to do.

I have already scheduled my barium swallow and CXR. My family doctor will be doing my repeat biopsy and I still need to schedule my PFT. I think I will get in to see my family doctor fairly quickly which is good because it is the biopsy the rheumatologist is most interested in at this point.

I am curious as to why my initial biopsy did not come back scleroderma but granuloma annulare. She did (rheum) mention something about going deeper into the dermis which I did double check with my doctor to make sure she is capable of doing. I also wonder what will happen if the biopsy comes back negative for scleroderma. She did mention some differentials but I got the impression she feels sclero is at the top of the list.

I feel like I am in a slightly advantageous position because I am an RN and can understand some of the physiological processes involved but whew -- who knew there were so many autoimmune associated conditions out there? I also feel lucky that I had the advantage of reading some of the messages on this forum which better prepared me for my visit with the rheumatologist.

Thanks again,

Mona

#8 Peggy

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Posted 04 April 2009 - 05:13 AM

I wanted to send a big Welcome. You have come to the right place to ask questions, to vent, to gain support, and to hopefully add some information for others.

You have attained half the battle in that you are sitting in front of a medical professional who takes you seriously and is willing to take the time to figure out what is going on. It took me a year of going from doctor to doctor to doctor before I finally got in front of a neurologist who wasn't happy with the "pieces of the puzzle" and he put me in front of a top notch rheumatologist who diagnosed me. I now have 6 different autoimmune diseases and am considered an autoimmune disaster but at least I know what I'm up against.

Since you are in the medical field you have learned the valuable lesson to follow your heart and if something doesn't feel right to keep plugging away. You have also found that you are your own best advocate and no one else will do it for you but you yourself.

I hope that you are able to get some answers. The sooner the better so you can get on the road to battle it. There are so many different options available. You will also see that each of us has different symptoms but the ones that seem to be unanimous is terrible fatigue and a lot of us have the reflux/gerd involvement. I also have terrible muscle pain that I battle too.

I wish you all the best and please keep us posted in how you are doing.

Warm hugs,

Peggy

#9 Amanda Thorpe

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Posted 04 April 2009 - 06:24 AM

Hello Mona

Here's another welcome! :)

I think I get the to diagnose or to not diagnose dilemma. When I was diagnosed back in 2007 I could hardly walk, was in constant pain and fatigued and as much as I did not want to hear the word scleroderma think not having a diagnosis at that point would have been worse. Once you name it you can treat it if not cure it and you can begin the process of horizon adjusting.

In case you do get a sclero diagnosis start sharpening you wit and humour now as they'll serve you well if you get inducted into the weird 'n' wacky world of sclero.

Take care

Amanda
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#10 Jeannie McClelland

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Posted 04 April 2009 - 06:31 AM

I'm with you, Amanda. The day I got the diagnosis, I was so relieved I burst out laughing. My poor rheumatologist didn't know me very well then and I think he thought I was hysterical. :lol:

Warm wishes and a good chuckle,
Jeannie McClelland
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#11 Kathy D

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Posted 04 April 2009 - 05:41 PM

Hi Mona, nice to meet you,

I understand not wanting to be diagnosed but also know the relief of finding out what is wrong with me.

Dear Husband and I were relieved that I was diagnosed so quickly, we now had a name for what my husband coined as "his wife has checked out of life".

I had prepared for a diagnosis of RA or Lupus, so I was really caught off guard when the blood tests came back with a high Scl-70 and negative lupus subsets. Deep down inside I did not reveal to dear husband that I had viewed a picture of scleroderma finger ulcers that were uncannily similar to what I had, just closed the computer screen like I could hide from it.

So I was torn, glad to start treatment but sad it was all real. But now I have started treatment so you should definitely find out too.

Take good care and I'm glad you are here.

KD
Diffuse Scleroderma Diagnosed March 2009

#12 Snowbird

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Posted 05 April 2009 - 10:35 AM

Hi Mona

I wanted to say hello as well. I'm sure you have already guessed that this is a good place to be to ask questions. You'll get true knowledge and factual information here. There's always someone here in the know who can help answer questions.
Sending good wishes your way!

#13 mona

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Posted 08 April 2009 - 04:14 PM

Thanks again for the warm welcome everyone. I figured I would update you all on my sclero journey;)

I had my biopsies today. She took one from the side of my hand and one from my lower leg since there is also some thickening and changes going on there. Unfortunately she was not too happy with the red dots on my legs. I thought the dots were from the prescription lotion the rheumatologist had given me but she does not think so.

That leads me to my next question. Has anyone used ammonium lactate lotion? I used it and I don't think I like the results. It made my legs kind of sore and even drier, if that is even possible. She said that it was erythema and broken blood vessels on the surface of my skin.

Another thing that bummed me out is that my b/p was 148/98 at the doctors office. I have a history of pre-hypertension and had been taking it at home with an electronic cuff. I discovered tonight that the electronic cuff is not measuring properly when I measured it with my manual b/p cuff because I got exactly what the doctor did when I used the manual cuff. Anyway, she wants me to start hydrochlorothiazide (HCTZ), a diuretic, which I have been trying to avoid.

I now have to have an ultrasound of the kidneys -- my goodness I think all my time is going to be devoted to tests!

Hope everyone has a wonderful day.

#14 Snowbird

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Posted 10 April 2009 - 11:18 AM

Thanks for your update Mona. It does sound like you'll be going through more 'testing' but that's a good thing in the long run, although time consuming now. It'sbetter to keep an eye on what's what and then your doctor will be able to help manage it for you. Sorry to hear about your blood pressure. I don't know anything about ammonium lactate lotion, can't help there, but I'm certain someone else will know. Let us know how your test results turn out, ok? I wish you good luck with them of course!
Sending good wishes your way!

#15 Jeannie McClelland

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Posted 10 April 2009 - 11:38 AM

Hi Mona,

This is from the National Library of Medicine/National Institute of Health's DailyMed page on ammonium lactate:

ADVERSE REACTIONS
The most frequent adverse experiences in patients with xerosis [dry skin] are transient stinging (1 in 30 patients), burning (1 in 30 patients), erythema (1 in 50 patients) and peeling (1 in 60 patients). Other adverse reactions which occur less frequently are irritation, eczema, petechiae, dryness and hyperpigmentation.
Due to the more severe initial skin conditions associated with ichthyosis, there was a higher incidence of transient stinging, burning and erythema (each occurring in 1 in 10 patients).


I know some of the lotions/creams commonly prescribed make my skin itch and burn too. It seems the heavier they are, the better they work for me. The nice light ones and I don't seem to get along.

Warm hugs,
Jeannie McClelland
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#16 jillatk

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Posted 10 April 2009 - 04:47 PM

Welcome to the forum Mona,
Sorry you had to find us, but glad you did. This is a great place to find support and resources. I am fairly new to the Sclero game - was just diagnosed in February 09, by a primary care physician who is really on the ball. The one suggestion I would have for you is don't overwhelm yourself with information. What you read can really melt the circuit boards. I find that if I read a little at a time and then give myself time to digest it and then clear my head and remind myself that the literature is about poplulations, not about individuals - and this is an extremely individualized disease. You may or may not get the full brunt of it. So enjoy whatever functioning you have and don't worry about the what if's.

You will also find that this is a test intensive disease. Lots of things to keep track of because catching problems in the early stages can prevent further deterioration.

Jill

#17 mona

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Posted 04 May 2009 - 01:33 AM

Hi Everyone,

I wanted to post an update. I am scheduled today for a kidney ultrasound. I had my chest x-ray and barium swallow last week and also received the results of my biopsies.

The barium swallow revealed that I had GERD (yep, taking medications for years for this) and a hiatal hernia which the doctor states is a fairly common finding. The barium swallow test was interesting and the radiologist was great. I noticed, mainly in hindsight, that I had a difficult time sucking that barium through the straw. It did not really occur to me until lately that my mouth is showing changes. For example, I have been biting my lower lip occasionally and I also noticed thickening of my top lip. When I purse my lips, deep grooves are evident. Does anyone else have this symptom? I am a lip biter and I know that it is now harder to bite my lips. I know that sounds kind of weird but true nonetheless. I have noticed for quite some time that my nostrils are much harder and less flexible and I am attributing these changes around my mouth to scleroderma.

Next thing to deal with is that my chest x-ray came back with an "artifact" on my right lung. I am scheduled for a CAT scan on Wednesday to investigate this further. Both the rheumatologist and osteopath (D.O.) feel this is a fairly common thing but it is making me very nervous considering I am a breast cancer survivor. All I can think of now is that I have lung cancer. Actually, I am doing pretty well at keeping my nerves under control, but I am nervous.

Next problem is the dermatologist basically said he doesn't know anything about Sclero and suggests I go to University of Pennsylvania or Jefferson to see a specialists. I am perplexed at this but I appreciate his honesty in his disclosure. However, I wish he would have done this a year ago.

My biopsy on my lower right leg revealed changes suggestive of morphea and my hand biopsy came back as dermal mucinosis. Needless to say I need a dermatologist and will probably wait months to see one.

Thanks again for sharing your stories and experiences. It does make dealing with this a little easier.

Well, I am off for my ultrasound appointment and will keep you posted.

Mona

#18 wennie

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Posted 05 May 2009 - 05:01 PM

Hey Mona, I have CREST. It's a lot of going to doctors, but it's just to keep ahead of things. It's great to hear you had a compassionate doctor. It's rare these days but I also had and have one too. For me, I always keep moving, put positive people in my life and enjoy every day the best I can, eat well, keep moving and laugh a lot.