Shameless Troll #3

[jeffn]

OK this one is a simple - From onset of your first SD symptoms how long did it take you to get a DX of SD?

For this troll I think the definition of first symptoms should be considered the first symptoms that made you go to the Doctor. I think for most of us looking back now we can pick out symptoms that were there and were SD related before that first visit perhaps going back years but for this lets just say it began with that first DR. visit.

So how long from that first SD related Dr. visit until DX?

[jeffn]

My first symptom, which was pain in my hands and fingers like someone was sticking a push pins into them, appeared in Jan '06. My GP told me after blood work in Aug. '06 that I had a connective tissue disease and sent me to a Rheumy. Rheumy #1 hinted that I might have SD or Lupis in late Aug. '06 and Rheumy #2 DX me in late Oct. '06.

So for me ten months.

[kathsherman]

Shortly after the birth of our first daughter in March of 1993 (I was 28 yrs. old), my symptoms began. Joint stiffness and finger swelling led me to seek medical care and a Dx eight months later (Dx in Nov. 93'). In my case, I believe that my pregnancy was the catalyst for this disease (fetal cell transfer theory???). I was a healthy person (happy/good diet/active/no prior illness) until then?
Kathleen

[isobelle44]

May 2007 I spent a weekend working in my yard trimming brush and all kinds of stuff and a few days later broke out full bore on my stomach with these huge itchy bumps that spread like wild. I know they were there before that cause i remember leaning on a counter like at the auto parts store , something about that height and felt a lump when i leaned on he counter, that was about 1 year before the brake out. I was diagnosed with morphea is September 2007. In Feb 2008 i was sent to Mayo for consultation with scleroderma dermatologist specialist and in April 2008 started 6 weeks of uva. That helped alot but didnt take care of all of it so i started on plaquinil in somewhere like July 2008. I was able to add 1 year prescription for minocycline in sept 2008. Most of my spots have burned out but my forearms are still active. So we will see where it goes from here. Sharon

[Cubby]

My arms and hands were "burning" and my fingers were swollen and puffy. This was in March/ April, 2004. I had just returned from England and Holland and thought I had gotten sick there.

I went to 10 different specialists in the Annapolis, Md and DC area--1 a month-- for ten months while at the same time, revisiting some of the 10 for followup visits. ALL my time was spent going to doctors. Some thought I had Rheumatoid Arthritis--a few (one was a dermatologist) had no idea, but wanted me to call him if I found out what it was. I later learned that one was a scleroderma specialist (found his website after I saw him) and he, also, did not know what I had. In addition, he was an arrogant JACK--youknowwhat. I told every doctor I felt like I was dying and I was the only one who knew it. I even took information regarding Scleroderma to one of these doctors and he said, YOU DON'T HAVE THAT.

Several months into this, I asked my husband to get transferred back to California, which he did. (Right before we left, the doctor who said YOU DON'T HAVE THAT--said, perhaps you do have Scleroderma).

We arrived at our new house in California on approximately January 27, 2005. I had a medical exam January 30. The doctor knew what I had by looking at me across the room. Obviously, he did all the tests, blood work, urine, biopsies, nail capillary tests, etc..................................He put me on Methotrexate, prednisone and other stuff.

That doctor sent me to the top doctor in the country (according to both doctors) In est March 2005. TOP DOC increased the Methotrexate and re-arranged a few minor meds. I kept getting worse. (Spent a lot of 2005 and early 2006 in bed). By then I had read about AP and wanted it and TOP DOC said NO. Also learned about Photopheresis and he said NO--give it up or go find another doctor).

Finally, the original Doc I went to on January 30, sent me to USC to a lessor known doctor In August, 2005. By then, I was a mess. He started me on Photopheresis. After 3 months, I wanted to quit. I now had debilitating finger ulcers. I had been hounding him for AP since the first day I saw him. He would not agree at first, but in late October/November, he agreed to add the AP. WITHIN A MONTH the finger ulcers were gone and the disease stopped progressing. I also notice very slight improvement in my skin with a tiny bit less pain (neuropathy). The rest is history!!!

YAAYYYY--I have my life back for the most part!!!!!

[beebell]

My first symptom was in April 2007. It was over night. One morning my fingers and wrist were very puffy and my fingers itched like crazy a few weeks later numbness started. I went to some random Dr and he said that my blood work looked perfect noting wrong with me that maybe it was Carpal tunnel. I went to a neurologist and that Dr told me it was Carpal tunnel and referred me to a surgeon.

In June of 2007 a developed a rash on the back of my legs and it hurt it was like a sunburn and it itched and it hurt to sit down I had that for 3 months. Went to Dermatologist he said I was allergic to my new leather office chair. I still wonder about that one??? He gave me this strong cream made my stomach feel like I was being kicked from the inside it worked it cleared up.

I tried acupuncture and massage for my wrist. Then I found a pain management Dr he injected my wrist with cortisone to see if that would help. November 2007 Heart burn indigestion started and In December I had tightness in my forearms, chest , underarms and the back of my legs. I also had Raynauds. I knew something was really wrong. My pain management Dr said that I needed to be tested again and for Scleroderma. Sure enough April 2008 I was officially diagnosed ( mannnnnn I really don't like the month of April LOL)

Now I have been on AP therapy for 14 months all my symptoms are REVERSING! my skin is almost back to normal. I can extend my arms and almost make a fist. The past few weeks I have seen some huge changes I'll be able to punch someone soon! LOL just kidding .. I have no more pain I feel wonderful! I have my life back!!!!!!

Our meds help us heal but I think all the LOVE ,PRAYERS, SUPPORT and putting up a good fight is the majority ingredient for HEALING... We are strong. We were given this illness for a reason. We must educate and help others be strong and get well.. I am a stubborn woman I must have my way and usually get what I want.. There's nothing wrong with that now is there?
xoxoxoxoxox

[sherion]

I was going to my doc for 3 years due to problems with my stomach. Severe heartburn, diarreah (sp) several times daily. My doc was treating me for H-Pylori. Finally he admitted he didn't know what else to do. I told him to send me to someone who COULD. That was my first trip to a gastro doc. He did more specific blood work and a colonscopy. His results were to send me to a rheumy. After more blood work and a trip for pulmonary testing, he diagnosed me with sclero. The almost funny thing was that the gastro doc said I NEVER had H-pylori!!
Once I was sent to the proper docs, my diagnosis was pretty quick. Just spent 3 years with a quack.

Sherion

[jeffn]

Beebell - My Docs first thought was Carpel Tunnel also. Spent several months going down that road. Can't get into all that now though as that is on my list for a future Shameless Troll. I'm thinking a series here.

Thanks to everyone who has participated so far!

[sherion]

My GI doc also sent me for a endoscope,and the test where you eat something and they test to see how long it takes to go throu the system (can't remember the name) and the monometry. He is quite thorough.

Jeff and Beebell, I also had carpal tunnel surgery about 5 years ago. Didn't know that had anything to do with sclero.

Sherion

[steve201]

mine was amazing..it came on so suddenly that we went to the doc and (sorry to say ..was an idiot)..took blood test after blood test...8 weeks and I was getting worse...hands puffy..legs cramped up ..out of breath just walking from the car to the clinic door...he had no clue what was going on ..so we had this huge fight in the clinic and told him to either send me to someone else or we were going over his head....afterwords we saw my present rhummy who did the battery of tests on me..bronchoscopy...fine cut ct scan..tons of bloodwork...skin pinch test..finally sent to seattle to see Dr. Furst...who spent some time with me to explain what I had.......then they conferenced about me for awhile and decided on the medication for me...
Furst didn't want me to do AP..didn't believe in it...Slack said whatever we can get to work is what we need to do....

mine was brought on by stress....

Steve

[beebell]

Wanted to add that my Dr. said that mine was triggered by a Strep Virus.

[christine10]

Hi Shameless;
My SD probably started in 1989 with carpel tunnel and rotator cuff problems.I could lift my cup of coffee but when I would turn my wrist the whole thing would drop all over me.The shoulders were so bad that I could not even turn over in bed.In 1998 I was feeling stiffish all over,as if I had not exercised in years and then went to the gym for a few hours.OUUUUUUU ,that hurt.By Aug of 98 I was getting swollen hands and put on prednisone which helped for a while.By Sept.I was having nausea and what seemed like a heart attack.I must have been to the E.R at least 7 times but all tests came back normal.In dec.,in the ER again< i had an exchange doctor from Korea who recognised it right away and said he thought it might be SD and to get to a rheumie right away.3 months later it was official.
It took over 5 years on AP and several fifferent antibiotics to reach remission

[peggypansy]

The red spots on my face finally got me to the doctor. One day I went to him w/o makeup on and said what are these spots? It took three months to get in to a rhuemy and while waiting I researched the diagnosis of Lupis that my internist made. It took the rhuemy 5 minutes to look at me and say CREST. At that time the only information he had on it was a 1964 medical report on it and he made a copy for me. He said it's not fatal. That was in the early 90's. We've come a long way, baby.

[aajmom]

I began having trouble with my hands in April '03- each morning my fingers were swollen like sausages and nonfunctional (they became more "normal" as the day went on). In Aug '03 a rheumy said I had connective tissue disease- discovered from blood work. For many reasons (too numerous to list here) I thought he was a jerk and found a different rheumy. Rheumy #2 diagnosed sd in Sept '03. Overall, not too bad of a journey- only several months. - Adriane

[joyu]

I had slightly stiff fingers in Dec 02 and by Feb. I was weak and had raynaunds. I was a nurse and had seen scleroderma ,so I ask for the test-anti-scl 70 -which came back positive,but they were not totally convinced until the next Jan 04 when my hands curled and wrists were fixed.
I had the answer in bld test within a week or 2 ,but Rheumy was not sure until a yr later.