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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 grace

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Posted 31 May 2010 - 10:12 AM

HI,
I am not real sure how to get around on this group and how to post things you want to ask or say. I'm not sure how I will find responses. I just kinda go from here to there and found this area so I will ask my questions here.

Does anyone have doctor issues? For instance: getting information, inconsistent records, they tell you things and write other things on reports, or they turn around things that you have told them and they leave out symptoms you tell them?
this is frustrating me terribly.

I think something was not quite right with me in my teens because I remember feeling tired so much and I had developed a swallowing issue at age ten. I do not know where it came from and no doctor could find anything wrong.

I was afraid to swallow and at such a young age I didn't know why or what to do. My parents may have been told it is a mental thing since they couldn't find another cause.

I used to eat only soft things and I would feel stupid so I would often hide my food and throw it away. I could eat canned fruit, bran flakes only if softened in milk. I never ate meat except meatloaf which I seemed to swallow ok.

When I became pregnant with my daughter at age 22 I was so hungry I seemed to be able to eat a bit better. To this day I am very careful how I swallow. It just seems like it gets stuck or something or won't go down. If I relax its somewhat better. I didn't take my prenatal vitamins at all with my seven children that I have. My doctor laughed at me when I told him I could no way swallow those huge pills and could he give me a liquid. He said his three yr old could swallow pills so I just made him think I took them and figured women in the old days probably didn't even take them. They watched my blood. I was low in folic acid and iron but it was a liquid I received so that was a good thing.

It was when I was about 30 when my eyes didn't tear up and I went to the doctor and he just said nothing is wrong you're just getting older. I had five kids by then and my youngest was seven months old.

My symptoms over the past twenty five years have been things like once my arm was so sore I couldn't move it and they said it was tendonitis. I didn't do anything to it. It finally felt better. I had pneumonia while I was six months pregnant with my fifth daughter. Once I had a stomach problem, I would eat and my food wasn't digesting, it came out looking like food and I was bleeding one evening really bad. I went to the doctor and he said I had gastrointeroitis. It took a while till I got over it. I don't remember what he did for me. I dont think it was anything really but to rest.
I always felt better while pregnant, then back to feeling kinda sickly. My appetite is on and off.

Collagen vascular disease is in my family. My mom has RA very badly and a connective tissue disorder. I lost my oldest daughter to a complication from a chiari malformation in dec 25, 2000. She became symptomatic after having a spinal to have her daughter, who is now nine, very cute I will add!

I have had a positive ANA for last eight years:speckled and homogeneous pattern plus ans anti-dsna titer for the same amount time. I have had echos for the last six years showing pulmonary hypertension. My doctors say primary, then secondary, then they dont know and my last echo showed 54hmg. My RH cath was ok but I have the effects of a dilated vena cava and enlarged right atrium and mitral valve regurgitation. I also have thickening. This is from high lung pressure. My insurance denied the medication Bosentan.

I also have this soft spot of a lump under my wrist. My hair falls out but grow back and I have constant regrowth so I have various lengths of hair all the time. I'm just glad it grows back. It may not be noticeable to others because it grows back and I don't have bald spots.

I had at some point large crater like sores in my mouth. My mouth and gums are sore a lot but the craters seemed not to be as much. I have been given a prescription pain medication for all over body pain and anti-depressant for anxiety. My hands hurt a lot. My joints are enlarged.

A pulmonary doctor at UC Davis said he saw scleroderma in my blood work. It's been there for many years. One doctor dumped me, I think because my insurance told him to. My insurance case worker made an appointment with a rheumatologist, they paid for it. My first visit he told me, "you'll live long life." I'm 54, and the pulmonary condition could just kill me. Why he would tell me I've lived a long enough life is weird.

My regular pulmonary doctor said I have a mild case of lupus but on his notes he writes "the patient has alopecia and thinks she has lupus." He was the doctor who ordered Bosentan. I also have Wolf Parkinson White syndrome. It causes a fast heart rate and I had to have a cardiac ablation in 2007.

Does scleroderma cause all over body pain in others? Or soft lumps under the skin? I have very itchy skin also, my finger nail fell off and doesn't want to grow back very well.

I probably have more I forgot but I'm tired of writing and you're probably tired of reading if you read this far, thanks.

joyce--grace

#2 Sweet

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Posted 31 May 2010 - 02:51 PM

Hi Grace and welcome!!!

I hope you are able to find your way back here to the forums to read posts, and to post yourself.

Sounds like you've been through a lot. All of your symptoms could be related to Scleroderma or several other autoimmune diseases. I do have over all body pain at times, the lumps can be calcinosis, the difficulty swallowing food is NOT uncommon with scleroderma patients, and of course the PH also takes place.

Have you seen a Scleroderma Specialist? If you let us know what state you are in, we can check to see if there is one in your area.

Hope to hear from you again! :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 janey

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Posted 31 May 2010 - 02:57 PM

Joyce,
I'm so glad you figured out how to post to the forum. Hopefully, you be able to get to this page to read replies as well as other threads. Sounds like you have gone through a whole lot over the years, but I see in spite of it all you have been lucky and have had 7 children. Congratulations!

With everything you have going on, I would definitely go back to the scleroderma specialist you saw or find another one. You need one doctor that can access all of your symptoms and test results and make a decision as to whether or not it is scleroderma. Many are your symptoms are common to sclero (swallowing problems, pain, PH, and itchy skin), but can also be found in other connective tissue diseases (i.e., lupus, RA, dermomyositis). If you need help finding a specialist in your area, please check out of Scleroderma Specialists page.

Have your doctors seen this list of symptoms? Next time you see your doctor, be sure to take in a written list of symptoms (or just print out your post!). I have found that many doctors love things in written form from their patients. It certainly wouldn't hurt to try.

Please let us know how you are doing and if you find anything out. Welcome to the Sclero Forums!
Janey Willis
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#4 Jeannie McClelland

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Posted 01 June 2010 - 02:46 AM

Hi Joyce,

Welcome to the Forums!

Your trials with the doctors sounds familiar. My general practitioner swore up and down I had asthma and if I just got rid of my dogs, I would have no more problems. Every other symptom was dismissed as nothing to worry about. The high ANA and an isolated diffusion defect in a PFT were completely ignored, so I made myself an appointment with a rheumatologist who also told me nothing was wrong! I kept feeling sicker and sicker so I asked to be screened at a national center of excellence for autoimmune and lung diseases. I started tests (lots of them) and 3 months later was told I had severe GI problems, pulmonary hypertension, and pulmonary fibrosis and oh yeah, systemic sclerosis.

I had requested all my old records and copied them before I handed them over to the center of excellence. Wow, what an eye opener that was. Needless to say I changed doctors.

I'd bet many of us here could tell a similar story. We all think having one scleroderma specialist 'running the show' is best way to a) get a correct diagnosis and B) the best treatment.

As for your insurance company, sometimes it just takes persistence. They will always want to try the cheaper alternatives before they approve the expensive ones. Soldier on!

Best wishes,
Jeannie McClelland
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#5 judyt

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Posted 01 June 2010 - 12:36 PM

Hi Joyce,
You are 12 years younger than me and I can tell you that I had the same run around trying to find out what was wrong. I had an episode of something called 'colic' when I was about 10 or 11, I remember having a barium swallow and being told nothing was wrong, then over the years things got gradually worse until about 2002 when I had a crisis and was vomiting blood.

All of a sudden the doctors in ER were telling me - well of course you have Scleroderma!!!!!!!
To go from being a hypochondriac to being told OF COURSE YOU ARE SICK was a great relief.
The Gastro man I still see now said - why don't we know you already?

The frustration is enormous and I know how you are feeling but don't give up now, do as the others have suggested and find a Sclero Specialist. Be thankful you live in a country where such people exist.

Now that I am getting older and take loads of meds each day to deal with the different symptoms I am finding life much easier, except for the exhaustion of course. Once upon a time I was either getting sick, sick, or getting better, then next week the whole thing would start again.

I think, too as somebody commented, that over the years this disease seems to moderate and although symptoms are still there they seem to be lessening, for me anyway.

Persevere with the on-line stuff, you will get the hang of it and find such great support here.

Warm hugs and best wishes from New Zealand.

Judy T

#6 Amanda Thorpe

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Posted 02 June 2010 - 09:31 AM

Hello Joyce

Welcome to the forums! I would also suggest that you see a scleroderma expert because they're best placed to deal with the intricacies of scleroderma, as you already know it does many things to many people.

Take care and keep posting.
Amanda Thorpe
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#7 eah

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Posted 02 June 2010 - 03:16 PM

Hi Grace,

I am sorry you have been thru so much. The symptoms you have are seen in scleroderma and other autoimmune diseases. I will bet that a majority of the people on this board have had similiar experiences with medical personnel regarding their illnesses. I think these symptoms over lap so many disease that often times, doctors are afraid to label people with a disease. A lot of autoimmune diseases are seen in families. My family history is strong for arthritis, celiac disease, crohns, colitis, dermatomyositis, fibromyalgia and chiari 1 malformation. I had three pregnancies and all of my children have some sort of autoimmune disease. I would highly recommend a sclero specialist at a major teaching hospital. Not all rheumatologists specialize in scleroderma. I wish you all the best. Please feel free to contact me privately with any questions.

EAH
ANN

#8 CraigR

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Posted 05 June 2010 - 04:27 AM

I would be surprised if you could find anyone with scleroderma who has NOT had "doctor issues"

Ditto to the previous advice on seeing the sclero expert. Most other doctors are incredibly ignorant about the disease. They have rarely seen it, so they aren't aware of how different it can be from patient to patient.

Like so many others, I've found that you must endeavor to be your own doctor (concerning researching your own disease), or you will be forever going every which way with underinformed doctors.

Craig

#9 warmheart

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Posted 06 June 2010 - 04:43 PM

Hi Joyce,

I'm sorry you've gone through so much in your life.

Doctors are under so much time pressure these days, and I think that's probably why things get mixed up sometimes in their notes. They're not out to get us! But it can get frustrating when it happens.

My primary care doctor is absolutely great. She is my advocate and lately has gotten pretty knowledgeable about scleroderma (there was definitely a learning curve). Recently she caught a problem that specialists overlooked. I think it's vital to find a good primary care doctor to coordinate all your care, and also a good rheumatologist who's knowledgeable about connective tissue diseases. I had good reasons for bypassing the general rheumatologists to see a scleroderma specialist; because I do have scleroderma and have a couple of issues that need to be monitored, it was a good decision that has really made life easier for me and also, I think, for my other doctors who are stuck with my medical issues and with me!

Please keep posting; I'm glad you've found us!

Hugs,

warmheart :bye: