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Looking4answers

Confused

20 posts in this topic

Hello, I am a 37 year old women from the NorthEast US. I have recently been diagnosed with systemic scleroderma / CREST. I went to the doctor due to leg and arm pain/weakness. Bloodwork came back and suggested an autoimmune diesese. I have since been diagnosed by a rheumatologist based on the following blood test results: Antinuclear Antibodies Direct and Antiscleroderma-70 Antibodies - both numbers are positive and both are at 227

 

A few weeks later I found a doctor specializing in CREST. I explained my symptoms and provided her with my recent blood work. Other than being rude and nasty she told me that I must not sleep well (I sleep very well - 8-9 hrs per night) and I should exercise (I am not overweight). She also told me there is no way that I have CREST because my skin is not thick. Completely disregarding my leg and arm pain.

 

Anyway, I am just wondering if I could have have crest without the skin involvement and if the blood test are a sure sign of having some type of autoimmune.

 

I would appreciate any help that anyone can offer. I am so confused - 3 doctors agree that I have and one just completely dismissed me----please help

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Hi,

 

I am not a doctor and I do not want to scare you. But as far as I understand, the finding of ANA and especially Anti-SCL70 is pretty conclusive to indicate Scleroderma (which kind is not so sure, although with Anti SCL70 it is normally diffuse as far as I have found on most pages).

 

Higher Titters of ANA also happen sometimes with healty people. And supposedly 90-95% of the Scleroderma patients have them (or in general any Auto Immun disease). So having just them would not be conclusive. But the SCL 70 I guess is much more indicative here.

 

There are also things like Scleroderma Sine (without skin thickening) and I also understand that not everybody has thick skin overnight...depending on the forum you have (in general its a good sign if it has not progressed quickly).

 

Thats all I can provide from across the ocean. And I am sure, there will be much better experts, than me...

 

K.

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Hi Lookingforanswers ,

 

Welcome to the group and you are not alone in getting the proper diagnosis. Yes, you can have + blood work and still have sine scleroderma....which has no skin involvement. My son has the + blood work, too, but is diagnosed with UCTD since he has no skin involvement either. He was on a downhill slide for 9 months before they put him on Plaquenil and he is doing fine now. Read through some of the forum messages and medical pages and you will learn alot......ammo for the next doctor visit!!!

 

Take care, Everyone.

Margaret

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I really appreciate your response. Please dont worry about scaring me as I am already an emotional mess. It is so frusting to get conflicting reports from these doctors. Well, for some good news I did just receive a positive report back from the cardiologist. He does not see anything more than a heart murmur.

 

This is the first time I visted this website, some of these stories are heartbreaking. Thank again for your input - Have a great day and good luck with everything

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looking4answers,

 

Maybe you should contact Red about her Doctor. She wrote in a post several days ago...

He tells me my rheumatologist doctor is probably the best in the Northeast USA (if you google sclero experts in the Northeast you get only my doctor and one more in New York City.) ...

I think you posted that you live in the same area.

 

Hope this helps!

Becky


Diagnosed with Diffuse Systemic Scleroderma May 2005

Raynaud's, GI, esophagus, skin and lung involvement.

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Welcome to the ISN Sclero Forums, Looking4answers. You must be really confused by the conflicting information. I don't know how you found this CREST specialist, but perhaps you should try to find another scleroderma specialist. Here is our page on Systemic Sclerosis/CREST Syndrome which should fill in some of the blanks for you. As you will see from the information given, the name CREST applies to the symptomology of Calcinosis, Raynaud's, Esophageal problems, Sclerodactyly and Telangiactasia. SCL 70 antibodies indicate a possibility of Diffuse Systemic Sclerosis, but the presence (or absence) isn't necessarily conclusive.

 

Here is the link Bowbec referred to of Scleroderma Experts.


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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Hi Looking4answers, If you live anywhere near Albany NY you might want to consider seeing Dr. Lee Shapiro at The Center for Rheumatology (518) 489-4496 (he's on the list of scleroderma experts that jefa linked, although the phone # is different on the link). I've been told he is the leading sclero expert in upstate NY, and is a coordinator of clinical trials of investigational drugs in this area. He just diagnosed me with systemic sclero sine sclero - other than some telangiectia (spelling?) on my face and feet, I have no skin involvement at all, definitely no thickening, and I don't have Raynaud's either. I have mainly esophageal, stomach and intestine problems, fatigue, and sore and stiff joints. I understand that it's a difficult disease to diagnose (my doctor tells me I've probably had it for 8-10 years!) but there's no need for any doctor to be rude, and you shouldn't put up with it! I know it's hard to fight back when you're confused and emotional and just want some answers, I've been there too, still am some days. You've been given some great advice here, these people here are wonderful -- inform yourself by reading up, sharing and discussing...and look around for a supportive doctor who can help you!

Keep in touch and let us know how you're doing.

red

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Looking4answers ~ Welcome to the ISN forums. Now that you have foud us, you should read up on all the "reliable" information that is available here.

Doctors are NOT all they are cracked up to be, that I know for sure. I would listen to the two who agreed and forget this latest one. Follow the info. that you have been given thus far (on here) and do a little research. You will not only be proud of yourself, you will find peace in knowing that you took the steps necessary to rest well.

Please let us know what you decide to do next ~ there are lots of caring and supportive people here to help you.

I saw three different rheumatologists before I found the one that finally diagnosed me.

Much love,

Nina (DE)

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Hi Looking4Answers

 

Sorry to hear you are having such a devasting time with your last doctor! I agree with the others, I also think that you should forget about that last doctor and find one that truly is knowledgeable in this disease that you 'click' with so that you are comfortable in asking all of your questions and getting the true answers you need from him/her. I'm sure you'll have luck with the help of the others here that have provided you with links and information to find one in your area if you decide to do that.

 

I'm the furthest thing from an expert on this but I do understand the anticentromere pattern in the bloodwork is indicative of Systemic Scleroderma Limited/CREST. My doctors say that the bloodwork alone is not enough for a diagnosis...you need to have at least 2 others symtoms in the CREST. So yes, bloodwork can point to any number of autoimmune diseases, scleroderma being just one of them...but you would need a rheumatologist to help diagnose what the bloodwork defines of course. Also, apparently some people can have the anticentromere pattern and it might never develop into anything because they never get any other symptoms.....there is no way to know what might or might not happen.

 

When this news hits, it's so frightening, not to mention confusing, that it's hard, I know, but try to take things one thing at a time, one day at a time...eventually, you will find answers. I know in the beginning, I read everything I could find on the net, not a good thing to do, I couldn't have scared myself more if I tried....so I can truly recommend sticking with this site for your factual information.

 

This is a great site to ask all your questions and you will find a lot of support here too. Take care.


Sending good wishes your way!

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Hi looking4answers,

 

Welcome to this home away from home, so to speak. So sorry you have been diagnosed with scleroderma. It is quite a battle for some to get a correct diagnosis. It sounds like you need a Doctor that specializes in scleroderma or at least a good rheumatologist. It was tough for me getting a doctor to put the pieces together but I did not have much lab to help. It sounds like you have some pretty specific lab that a Doctor could easily work with. I came from the north east too. I followed the birds a ways south east one day and finally got a diagnosis after many years, (about 20). Depending on where you are in the north east, the pickens can be slim. There is an arthritis site that will give you a list of rheumatologists by region. The skin thing I heard from other people up north too. Specifically some of my relatives. I can't help with specifics because I've been gone so long, sorry. I wish you the best in finding a good Doctor and I know they exist somewhere up there. Search some specific sites. Jefa left a link for you with specialist.

 

It is a pleasure meeting you and hope to hear some good news from you soon in reference with your quest for a doctor.

 

Judy


A happy heart is good medicine.

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Good Morning All!

 

Wow, I am overwhelmed by the kidness and caring of everyone on this site. I can not thank you all enough for your very valuable advice. I have an appointment on Friday with my rheumatologist and I am very pleased to say that I will be a bit more educated regarding my diagnosis thanks to all you caring people. My rheumatologist is very caring, and deeply concerned about this....unlike the so called specialists. Again thank you all very much and I will keep you all posted.

 

Stay strong and have a wonderful day~

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Looking4answers,

I have Crest and I have no skin involvement, no skin thickening nor Raynaud's. I'm starting now to get some Telangiecsasia on my face & back.

I think that doctor is a bonehead to tell you you cannot have Crest without skin involvement. Shows that she doesn't know her stuff.

I hope your appointment goes well on Friday.

Let us know what the Dr says.

Cheryle

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Hi Looking4answers,

 

I agree with everyone else. I am in the same boat as you are, I have CREST with no/minimal skin involvement. Sometimes there is never skin involvement, sometimes it takes a few years to show up. Scleroderma is weird like that.

 

My doctor is THE Lee Shapiro spoken so highly of. He is AMAZING and I use that word truthfully, not like the teenagers say everything is soooo amazing! :) He is a wealth of knowledge, you can peek in his office and there he is, sitting on the floor of his office surrounded by files and studying. He encourages me to research and SEND HIM NEW INFORMATION when I find it!! He stays up late and calls you at home after office hours to see how you are! He visits you in the hospital and teams you up with doctors you need, like blood specialists. He calls other doctors on your behalf and get this--he called my insurance company three nights in a row, to get me medicine approval because they are in Washington state and he would call them when he got home so he could be on hold forever without being in the office!

 

My husband comes on all my visits and asks a million questions, the good doctor loves teaching! Once when hubby couldn't make it, the doctor asked, where's your hubby? He KNOWS me! Once I was in the hospital through the ER and they must have sent my lab info to him, he called me right away and told me that what I had was probably sclero related (a pseudo-obstruction) and talked to the doctors at the hospital and told them what might help. He was right, and saved me from unecessary surgery!

 

I drive over an hour each way to see him and I would drive further if I had to. He has two whole days set aside just for scleroderma patients. If you google sclero.org you will see his face as one of the founders and many of his articles.

 

I love the guy, can you tell? :) welcome to our group. try to gain info so you don't remain scared.

Peace,

Karen

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Looking4answers

I have Limited Systemic Sclerosis but as yet have no clearly defined skin problems, I do get very puffy fingers & pain in my hands. I have positive blood test for the anticentromere pattern along with Bad Raynaud's, looping/tortuous capillaries of the nail beds, telanglecasia, esophageal problems fatigue & joint/muscle pains. I was only diagnosed 12 months ago but my first symptoms (Raynaud's ) appeared about 10 years ago. I was constantly being told there was something wrong with my autoimmune system because blood test where always border line but once they became positive they started looking more closer at everything else.

 

The site is really good for support & information & I hope you get some answers to your questions soon.

Take Care

Jensue

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I think conflicting reports from doctors is the norm. In my case I got conflicting reports from the same doctor. She told me that I did not have sclero or lupus. The note she sent to my general practitioner said I do and that is supported by the labs.

 

Just hang in there. This happens.

Betty

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Hi,

 

Please try not to be confused or scared. There are a lot of medical professionals and others who are not at all familiar with this disease. It is best to see a rheumatologist who specializes in scleroderma. I had postive blood work and no skin involvement 8 years ago. My blood work has fluctuated from postive to negative. I had raynouds for 10 years prior to that. I now have joint/muscle pain, trouble swallowing, intestinal problems, fatigue

etc. I have been formally diagnosed by a rheumatologist. I still get other professionals and even some of my own family who look at me like I don't have scleroderma because I don't have skin involvement. The good news is that with proper care from the right rheumatologist and other professionals, you can manage most symptoms with medication. I am still able to work and take care of my family. Scleroderma is not a death sentence. I view it as an inconvenience. With the proper intervention, you can live a long productive life. I would recommend major teaching hospitals near your home and then research the rheumatologists. Please feel free to e-mail me privately with any questions. Good luck.

 

EH


ANN

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Hi,

I also have been diagnosed with having Crest/Limited Scleroderma, I have had it now for the last 18 months or so. I have tested positive for anti-centromere antibodies as well as a high ANA titer:1600. I only developed Raynauds 3 months into my diagnosis. I currently don't have any hardening in the skin ,only two puffy fingers. I have felt the tightening though on my face and on both wrists.

Oh, and also have the dilated nail capillaries. My mouth is also small and I have ridges under my bottom lip.

 

Since my diagnosis, I have alot of internal things going on, Tachycardia(fast heart rate), which is controlled by medication, and also ?Pulmonary Hypertention.

Reflux and also Gastritis and Diverticulitis of the Bowel. I recently have had Bacteria Overgrowth, which I believe many of us have here on this forum at times. Stiffness and pain is always there and painful joints at times, also Shortness of breath(SOB), and painful lungs at times.

 

As you can see, we all start off with different symptoms, no two people present the same with Scleroderma. Try and not to get so overwhelmed and take one step at a time and deal with issues only when they arise. If you look for problems with this disease you will always find them.

 

I hope I have helped some

 

Take care

Celia

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Good Morning Everyone.

 

Hope everyone is doing well! I had my follow up visit with my rheumatologist on Friday. The funniest thing was he received a report part from the so called scerlo specialists. She actually stated that I may have drinking problem...too funny. I made a joke that my legs and arms always feel better after a glass of wine (I know now to leave my personality at the door of most doctors). Yes, I do drink once a week but I am far from an alcoholic. Just proves what a wack job this women actually is. My doctor is now running different blood test, but I am not sure what they are. He has also provided me with a script for a pulmonary function test. After reading some of the different post it appears that this is a standard test once you are diagnosed with CREST or Sclero.

 

I actually feel good the last few days....strange. Has anyone else felt severe pain one day and then ok the next? I received a few different prescriptions...one is actually a prenatal vitamin. No, I am not pregnant. I had a hysterectomy back in 2005 at the age of 31. The other is something to help me sleep and then also help with the extremely low energy during the day. I researched a bit on line and they typically prescribe it for people who do shift work which I do not....Have not filled them yet but we shall see if it helps.

 

Well, just wanted to give an update.

 

ps. I have not responded to any other posts because you guys all give such wonderful advice and I am not yet as informed as most of you. Just wanted to say that I am concerned with everyone else but just don't have any great advice to offer yet.

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Hi Looking4Answers

 

I personally thought your joke was funny!! I suspect if someone did have a serious problem, then it would not be but if they don't, then it is funny! It will be interesting to hear what tests your doctor has run with your bloodwork...hope you keep us updated. Glad to hear you are at least having a couple of better days and that you get some rest...it's very important although hard to do with so many things running around in your mind when you first learn about this disease.


Sending good wishes your way!

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