PDA

View Full Version : scleroderma



AnnMarie
04-03-2008, 07:07 AM
Hello everyone,
I am back after researching like crazy.
You might not remember me but I had posted that I was diagnoses with Lupus a couple a months ago. Since then, I was told that I have many of the markers in my blood but also those of sjordrens and scleroderma. I have been emotionally fragile since this is all being thrown at me at the same time I am going through a nasty and expensive divorce.
To the point, my lawyer received a medical document from my attorney that I asked to be forwarded to me. I did sign a release, but I was shocked when I read the report and it indicate that I was suffering from an auto immune condition and that I had a high potential for developing scleroderma. Nothing about Lupus.

17 yrs. ago this very same doctor treated me and got me back to good health. I had a viral pneumonia which I was told knocked my immune system into over drive. At that time, he said I might have to retire and adjust my lifestyle. I was spunky and told him "No Way". I went through all the re-innoculations, stayed isolated for 3 months and followed up w/him weekly until it was monthly, six months, then my visits were yearly. Then I decided, I do not need him. I have great respect for this doctor and he knows me well. I am now a retired law enforcement officer, then there were times where I would be in the middle of a search warrant, run down to his office, tell him to hurry, get my shot and go back to work.

I was told that he, my favorite specialist, had retired and so I allowed myself to get to this decline of health for I did not want to get bounce from doc to doc as I did those years ago. Just by chance my primary called his office and found out my favorite doc was semi-retired and wanted to see me.

Sorry for the rambling. Anyway, I look terrible and when I saw him I looked even worse. I had lost 50lbs and was physically and emotionally beat-up. I may be justifying my doctor's report, but I believe that he is has danced around my diagnosis because he does not want to cause me any more stress and because he remembers me as a strong fighter. I know he was shocked when he walked in the room and saw a fragile shadow of the person he remembered. Well, I was shocked to see scleroderma instead of Lupus.

I am wondering if any of you have had this similar experience?
When I say I have been researching, I can tell you that I am back in college and am in a class on biotechnology which absolutely pertains to all of us on this site. My professor has allowed me to omit the lectures in person because there are about 80 coughing kids in the room. I take the class on line and then meet with him once a week, one on one. Since this technology is all about genetics, bioengineering, DNA mutations, I am probaly his most attentive student he has ever had. I am absorbing every word he says and am learning all I could possibly learn in his class. I even steal more of his time to go into more in depth conversations about genetic engineering which is promising for all people with chronic diseases.
I posted on the sclermoderma forum and was crushed by members who did not believe that I had the disease. Frankly I am not sure what I have now, other that multiple markers for multiple conditions. Gosh, I cried myself to sleep last night. I was called a fraud and that I was only on the site to collect info for a term paper.

I am staying right here, where I am accepted. This is a wonderful and compassionate forum.

I thank all of you for that!
ann

Saysusie
04-03-2008, 07:37 AM
Hi AnnMarie;
First of all......OMG!! what kind of support group calls a person a fraud?? I have had people come to this site and state that they were doing research for a paper or something similar. I left it up to the members to participate or not and simply asked the person to respect the rules of this forum and its members. But, anyone who comes with a genuine question deserves to have a well researched answer. So, I'm glad that you dumped them.
With reference to Scleroderma. This illness is known as one of the "sister" diseases to Lupus. Meaning, it is an auto-immune disorder (like Lupus) that also affects the connective tissues. Lupus Erythematosus and Scleroderma are also both classified as vascular diseases, along with polyarteritis nodosa, and some other diseases, but Lupus and Scleroderma also have one other thing in common they can be treated in a similar manner with equally good results!
Lupus Erythematosus is a chronic disease that can affect the skin by disk-like patches with raised reddish edges and depressed centers, and covered with scales or crusts. These crusts often will fall off, leaving dull-white scars. Systemic Lupus.
Scleroderma is a disease of the skin in which thickened, hard, ridged, and pigmented patches occur. During the course of the disease, the connective tissue of the skin layer beneath the epidermis (corium) and the subcutaneous structures are increased and a "hidebound" condition results.
Scleroderma differs from Lupus because it causes hardening of the skin (unlike Lupus rashes or Lupus lesions). Some of its symptoms include: calcium deposits in connective tissues; Raynaud's phenomenon; narrowing of blood vessels in the hands or feet; Swelling of the esophagus (the tube between your throat and stomach); Thick, tight skin on your fingers; Red spots on your hands and face.
It is not unusual for Lupus patients to have Scleroderma as one of their overlapping diseases (and vice versa). Also, when patients have a combination of these diseases (and other diseases, like RA), they are generally diagnosed as having "Mixed Connective Tissue Disease - MCTD"
The connective tissues are fabric-like substances that form a matrix that wraps and fills all the spaces in the body, even extending into the innermost parts of cells. All the major bodily systems (the circulatory system, the nervous system, the digestive tract, the musculoskeletal system, and each individual organ) are surrounded and supported by the connective tissue. With the exception of cartilage, all the connective tissues are highly vascular. Collagen is a fibrous, insoluble protein in connective tissue. It represents about 30% of the total body protein. The diseases that affect this tissue are collectively known as connective tissue disease (CTD), or sometimes collagen vascular diseases. These include systemic lupus erythematosus (SLE), scleroderma, rheumatoid arthritis, and a combinations of these three diseases, called (as I mentioned earlier) mixed connective tissue diseases or MCTD's. They share many characteristics, and many of their treatments are the same.
So, since all of these diseases are in the family of Connective Tissue Diseases, any person having any of them is more than welcome here on our forum. You are doing the right thing by researching and gaining as much knowledge as you can about your illness (be it Lupus, Scleroderma or a combination of the two). We will help you to do this in any way that we can.
Making a diagnoses of Lupus or Scleroderma is, as you know, very difficult and doctors must do so by a process of elimination. As I said, many of the characteristics are the same and you may have more markers for Scleroderma than Lupus (even though you have markers for both). You may, eventually, be diagnosed with MCTD. In either case, the treatments are also similar.

Peace and Blessings
Saysusie

rob
04-03-2008, 09:38 AM
Hi AnnMarie,

Nobody will call you a fraud here. That is just disgusting that you would be treated that way. It sounds like we have a few things in common. I went through a nasty breakup with my longtime girlfriend/fiance, not long after my diagnosis. Luckily we weren't married yet. I've spent most of my career in the field of firearms R&D, and was a civilian employee of a couple different law enforcement agencies in the role of armorer/instructor. I had to quit my career far too early, and I'm now on disability. I've done some research myself, but nothing on the technical level you are currently involved in. Most of my detective work has been trying to find a link between various chemicals/toxins and SLE. I've handled a bunch of different hazardous materials over the years, and I have always wondered if some of it triggered my SLE. My mother has SLE that has been in remission for a couple of years now. So for me, there is a genetic link as well. I'm afraid I've not come up with anything solid at this point. I think what you are doing is great. The more serious research, the better. Anyway, I know that you will find acceptance and understanding here, there are some really good, down to earth people on this site, and a good base of knowledge as well. Once again, Welcome!

Rob

sits_inthe_corner
04-03-2008, 11:02 AM
AnnMarie

First off, welcome :) and hugs and glad you are here.

Secondly grrrrrrrrrr @ snittybritches for calling you a fraud. I hope you called him a few choice names. :)

If you would like some examples of what to call him, pm me :)

sick n tired
04-03-2008, 11:19 AM
Hi Annmarie,

I echo the above incredulous responses....how aweful...fraud???

As Rob said, nobody calls you those names on this forum. You are totally welcome here.

I am sorry to hear that you are feeling so poorly. I have gained weight but losing that much weight has to affect your strength. I am glad that you are back with the original doc. He seems to be on the ball where you are concerned.

Sorry to hear that you are going through a divorce at this time. I am sure that you have heard that stress makes these conditions worse. It is sometimes hard to live a totally stressfree life.

Well....Welcome to a forum that will not make you feel unwanted.

Karen

AnnMarie
04-03-2008, 05:09 PM
To all of you,

I can not express the thanks for your words of encouragement. Also for your incite and knowledge on our diseases. I can sigh with relief that I am a place where I will not be attacked.

Most gratefully,
Annmarie

Pretti in Pink
04-04-2008, 04:59 PM
Sorry for such an awful experience, what is the purpose of their forum, if it's not for support, understanding and encouragement? Well, we're all family here, so welcome to the family.