Shameless Troll #4

[jeffn]

Ok - we have been to the Doc the first time and have an idea about how long it took to get our SD DX.

So Shameless Troll #4 topic is - What were the symptoms that made you go to the Doc that first time (some of us covered that in troll #3) and what did they think you had at the end of your first visit? Or at least what did they tell you before you left that first time.

[jeffn]

My first symptoms were the push pins in the hand and finger feelings. At the time I noticed my hands and fingers were swollen also. I had fallen at work and landed HARD on my hands. My GP thought perhaps carpel tunnel and sent me to an ortho doc. He did say that first visit that he thought the fall could be a "red herring" and not the cause of my symptoms, time would prove him correct.

[joannern]

I had little dark bumps on my finger tips. I kept bumping them and they hurt. I thought they were warts and went to a dermatologist. He took one look and said no, you have CREST you need to see a rheumy. I had a friend who had died of CREST about a year before, I was freaked out. Now looking back, in addition to Raynauds which I had 20 years before the SD diagnosis I had other symtoms that were never tied to SD. The official diagnosis was in 2002. I have little skin involvement but kidney and heart problems along with Sjogren's, Raynauds, itching, major dental issues and on and on.

Joanne

[steve201]

mine was crazy...my legs cramped up solid...couldn't walk....my hands blew up like mickey mouse hands...everything on me hurt..couldn't catch my breath...so....went to the idiot doc who couldn't read a blood test...took us 8 weeks of going round and round with this clown and finally told him to send me to someone else....the new specialist...a rhumy took several looks at me gave me a fist full of tests and after he got thru said..you have Systemic SD....by now I was about 3.5 mos into the disease and feeling horrible by the day....took another 2 weeks to get into the specialist and then another couple of weeks for the official diagnosis and start of prescriptions....so...before treatment even started I was about 6 mos into the disease....didn't feel any relief from it until about 2 yrs later....by then I was a full up cripple.....

Steve

[carolyn12]

Hi everyone! At first my fingers started swelling & stiff, and turning blue when cold, and I also had very bad acid reflux, I started to lose alot of weight. I went to the Dr. and I told her all the symptoms and right away she told me it looks like SD, since she had a friend that had SD. So she ordered all the tests and confirmed I had SSD. Skin tightening, red spots on face, insomia, & depression all came afterwards. The good thing is I never had pain, still today I don't have pain. Just alot of fatigue.

[sherion]

I started off with severe indigestion, so bad that I was eating Rolaids and drinking Maalox by the bottle. Also the diarrhea that would happen 10 or more times a day. Was finally sent to a gastro doc and he did all kinds of intestinal and blood tests. He sent me to a rheumy with the possibility of Lupus. Rheumy did further blood work and a health history that went back to my childhood. On my second visit to him he diagnosed Sclero.

Sherion

[mumof3]

My initial symptoms were numbness and tingling. It started shortly after I had my third child (Nov. 2007). The neurologist was thinking MS but my MRI and examination was fine. A few months later I saw an internist who did loads of bloodwork. She discovered that my SLC70 was positive. She was shocked and believed it to be a false positive. She re-tested it and it was positive again but said I had no symptoms. She then referred me to a rheumatologist. The rheumy also re-checked my SLC70 and it was positive a 3rd time. She said that I didn't have enough symptoms to diagnose with me SD (that was Oct. 2008). She also said that the type I tested positive for I would have a lot of skin involvement. I still don't have any skin involvement. But I have had muscle and joint pain. I also have bad heartburn and pain around my ribcage. I don't have Raynauds but my circulation in my hands has gotten worse.

[aajmom]

My first symptoms were swelling of my fingers. My GP really didn't know what to make of it- took an x-ray to see if anything was broken!! Eventually I was sent to a rheumy who said I had CREST- he was basically an idiot and I ultimately found a doctor who was very knowledgeable about sd and who has been treating me since then. That was 6 years ago. I've had skin thickening and tightening, acid reflux, raynauds, fatigue and some kidney involvement.

[kathsherman]

Initially(1993....28yrs. old.. shortly after the birth of our first daughter) I had swollen fingers and a sore (beginning ulcer) on my finger which led me from my family Dr. to my rheumy, all within a week. Labs were ordered and a Dx was given which led to immediate aggressive treatment (several different meds.)....thank goodness!

[deannagraham]

Most of mine seemed to come on all at once, like a paint pot of different colors thrown at me. Most symptoms listed above were also listed by me in a fall 2007 doctor's visit. The one not listed above that stands out as most significant was a trip to the ER in 08/07 for left side arm pain, nausea and a meteoric spike in my blood pressure. I underwent a stress test and was put on hydrochlorothiazide because my bp went back down and the spike never occurred again. I link this to scleroderma because of the connection with renal function/blood pressure/scleroderma. I began seeing a rheumatologist 12/07, and was diagnosed with scleroderma 03/08.

[deannagraham]

Is there a formal purpose behind the exalt/smite choice, or is it still a mystery? I really dig exalting the only 2 people who acknowledge my posts: Cubby and Steve. hehehe A little instant Karma gonna get you~~~~~~

[Nancy - South Jersey]

I started with my hands turning blue when cold. I asked 3 different doctors about it and they just said, "Oh, that's Raynaud's, don't worry about it". It persisted for over a year and finally my family doctor referred me to Rheumatologist. I was sent for extensive blood work (including a Cryoglobulin test that would determine if the Raynaud's was an independent case aside from any disorder), chest xray, and pulmonary studies. The Cryo. test came back negative, which meant the Raynaud's was being caused by something else. My blood work was "as high as can be" (per my Rheumy) for Systemic Scleroderma. My chest xray showed some interstitial markings (also a sign of SD) and my PFT studies were borderline. I was referred to a Sclero Specialist in Phila, Pa. I eventually had my blood work and PFT's repeated. My blood work came out the same, but my PFT's showed me at 99%. Since I don't have any skin involvement at all and my PFT was normal, the Sclero Specialist said that I possibly might NOT have SD. I don't know what to think now. What confuses me the most is that when I worked I administered PFT screenings and I would sometimes have to give myself a test to calibrate our machine. This happened over the past 20 years and I was NEVER at 99%. I was always in the 70's. The girl giving me my most recent test was having problems with her machine and I'm wondering if that 99% is a mistake, but My doctor said that you can have a mistake at a lower reading (leaky mouth piece) but you couldn't have a mistake at 99% I just recently had an echo stress test and it showed some "mild pulmonary hypertension". I see my rheumy again next week and I want to try to get my PFT's repeated. Otherwise, I feel pretty good.

[joyu]

I went to the MD when I started getting extreme exhaustion and they thought it was lupus because my hands were not curled yet. Also I was having raynauds.

[grammie]

Mine were my hands and feet...oh did they feel like needles going in me and were they huge....went from a size B shoe to EE in just a few months. I was also getting Raynauds A LOT!
Slowly but surely it went to my lungs and in several months I went from walking to a wheelchair and a walker/canada crutches around the house.....
Sure glad that is all behind me now!!!

[Peggy]

Mine started out with my hands and feet tingling like they were going to sleep. The first thing done was the local doc did an MRI as she thought for sure it was MS. That came back negative. Off to a rheumy who thought it was post-polio. Went to Sister Kenny and they said no. Next doc said it was because of celiac disease and I wasn't adhereing to the diet. Then found out I didn't even have Celiac Disease but only glutten intolerant so there went that theory. Then they thought it was Lou Gehrigs. Nope not that. Then it was chronic fatigue snydrome. Nope not that. Finally saw a neurologist who specialized in peripheral neuropathy as now they were going numb and it was going up to my knees. He had me see a colleague who diagnosed the Systemic Diffuse Sclero, Sjogren's and Raynauds, and then Polymyositis. It was a very long and hard year and if it wasn't for my knowing that there was something wrong with me and that I knew it wasn't good that I kept on fighting for an answer. Granted the news wasn't good but at least I finally had an answer and was finally taken seriously. Some of the quacks I saw on this journey shouldn't be practicing medicine and really need a course in bedside manner and how to deal with people who are sick and they should actually try to listen. I love, love, love my doctors and I am so grateful the care I'm getting now and know that I'm dealing with experts in this disease and all it has to offer my poor body.

Warm hugs,
Peggy