Question:
Saffie, Your symptoms are certainly not classic for scleroderma. The diagnosis is usually made through a combination of blood tests such as ANA, ACA, SCL-70, etc. These are described more fully in my scleroderma faq located at: http://www.synnovation.com/sclerodermafaq.html If your physician is not a rheumatologist, you should definitely go to a rheumatologist for a second opinion. If it does turn out to be scleroderma, you should be under the care of a rheumatologist anyway. After reading the FAQ and other articles, if you have further questions you can ask the group and you will get lots of support and answers. But I would first try to get a second opinion so you have a better idea what you are dealing with. Best wishes and lots of support. Ed On Fri, 7 May 1999 15:27:11 -0400, Sapphyre Aria McCallister – Hide quoted text — Show quoted text -<mjmis…@athena.louisville.edu> wrote: >i have no idea what is going on… in 97/98 i had bronchitis 14 times and >pnuemonia 2 times. they took a chest xray and there was something weird >and then an MRI but said it was something there but not important, >soemthing that should have disappeared when i was a baby … nothing >important. they tested me for lupus… in the last two years i have had >blood tests blood tests xrays and more blood tests. nothing. >now my hair is falling out, my cuts won’t heal, i get dizzy spells and 1/2 >second blackouts … just enough to fall down the stairs, a couple >times… >last august (98) i got a "thing" on my arm… looked like a bruise. a >dark brown/blue bruise… about the size of a nickel… over the next few >months it grew to about 2 1/2 inches… in Jan i went to a dr who said he >wanted more tests (I FEEL LIKE A DAMN PINCUSHION!!!) and then had a >problem and couldn’t move my arm without crying cuz it hurt and went to >the ER Feb 12 … they did a "needle biopsy" (wasn’t a needle, it was a >harpoon i swear!) and found otu i had mono… gave me antibiotics because >i also had bronchitis (AGAIN!) but they gave me dicloxicillin (aftert >being asked not to because my whole family is allergic to THAT pcn) so i >had an allergic reaction and was messed up for two days. anyway. went >back to the dr in march who sent me to University Hospital to see an >"ivory tower dermatologist" … did a biopsy (AGAIN) with a bigger thing, >called it a punch hole biopsy … eew. >the doctor told me it was scleraderma, a hardening of the skin… not >important, really… told me he wanted MORE blood tests… and a UA which >they did… supposed to go back in a month… >now i looked up scleraderma and got all this stuff… it is scary. WHAT >IS THIS? what is wrong with me and why did no one tell me earlier? >Saffie >————— >mjmis…@athena.louisville.edu >Private email welcome. >AOL Instant Messanger: SaffAria ICQ: 36558129 >MY WEB PAGE >http://www.louisville.edu/~mjmisu01/
—————————————————————- If found listless or depressed, administer chocolate immediately! Ed Harris ehar…@synnovation.com —————————————————————–
Response:
Saffie, Alot of the time doctors just dont have enough education to jump to scleroderma as a diagnoses or like mine told me its rare, its concerned an orphan diesease and they look for it. Also it is very hard to diagnose. There are so many symptoms and it varies from patient to patient. Alot of people w/sd have skin involment, mine for example, is very little and very limited but my internal system is being raked over by scleroderma. Many of us go through years in total confusion before we are finally diagnosed. There are alot of sites/links you need to research because educating yourself is going to be your armor. Sherry, Amie, Ed, Ronnie and countless others have sites to link to. It is important too that you try your best to keep postive and love yourself. This reduces the stress. Stress is enemy number one. Educating yourself, posting w/us in this wonderful, loving ng family will help take away the fear, isolation and even some of the anger. We have all been through it and we still continue to go through it. The difference is we go through this together and that gives all of us comfort. Thats why we are here. Support. Education and Love. Love and Hugs Colleen – Hide quoted text — Show quoted text -Sapphyre Aria McCallister wrote: > i have no idea what is going on… in 97/98 i had bronchitis 14 times and > pnuemonia 2 times. they took a chest xray and there was something weird > and then an MRI but said it was something there but not important, > soemthing that should have disappeared when i was a baby … nothing > important. they tested me for lupus… in the last two years i have had > blood tests blood tests xrays and more blood tests. nothing. > now my hair is falling out, my cuts won’t heal, i get dizzy spells and 1/2 > second blackouts … just enough to fall down the stairs, a couple > times… > last august (98) i got a "thing" on my arm… looked like a bruise. a > dark brown/blue bruise… about the size of a nickel… over the next few > months it grew to about 2 1/2 inches… in Jan i went to a dr who said he > wanted more tests (I FEEL LIKE A DAMN PINCUSHION!!!) and then had a > problem and couldn’t move my arm without crying cuz it hurt and went to > the ER Feb 12 … they did a "needle biopsy" (wasn’t a needle, it was a > harpoon i swear!) and found otu i had mono… gave me antibiotics because > i also had bronchitis (AGAIN!) but they gave me dicloxicillin (aftert > being asked not to because my whole family is allergic to THAT pcn) so i > had an allergic reaction and was messed up for two days. anyway. went > back to the dr in march who sent me to University Hospital to see an > "ivory tower dermatologist" … did a biopsy (AGAIN) with a bigger thing, > called it a punch hole biopsy … eew. > the doctor told me it was scleraderma, a hardening of the skin… not > important, really… told me he wanted MORE blood tests… and a UA which > they did… supposed to go back in a month… > now i looked up scleraderma and got all this stuff… it is scary. WHAT > IS THIS? what is wrong with me and why did no one tell me earlier? > Saffie > ————— > mjmis…@athena.louisville.edu > Private email welcome. > AOL Instant Messanger: SaffAria ICQ: 36558129 > MY WEB PAGE > http://www.louisville.edu/~mjmisu01/
Response:
i have no idea what is going on… in 97/98 i had bronchitis 14 times and pnuemonia 2 times. they took a chest xray and there was something weird and then an MRI but said it was something there but not important, soemthing that should have disappeared when i was a baby … nothing important. they tested me for lupus… in the last two years i have had blood tests blood tests xrays and more blood tests. nothing. now my hair is falling out, my cuts won’t heal, i get dizzy spells and 1/2 second blackouts … just enough to fall down the stairs, a couple times… last august (98) i got a "thing" on my arm… looked like a bruise. a dark brown/blue bruise… about the size of a nickel… over the next few months it grew to about 2 1/2 inches… in Jan i went to a dr who said he wanted more tests (I FEEL LIKE A DAMN PINCUSHION!!!) and then had a problem and couldn’t move my arm without crying cuz it hurt and went to the ER Feb 12 … they did a "needle biopsy" (wasn’t a needle, it was a harpoon i swear!) and found otu i had mono… gave me antibiotics because i also had bronchitis (AGAIN!) but they gave me dicloxicillin (aftert being asked not to because my whole family is allergic to THAT pcn) so i had an allergic reaction and was messed up for two days. anyway. went back to the dr in march who sent me to University Hospital to see an "ivory tower dermatologist" … did a biopsy (AGAIN) with a bigger thing, called it a punch hole biopsy … eew. the doctor told me it was scleraderma, a hardening of the skin… not important, really… told me he wanted MORE blood tests… and a UA which they did… supposed to go back in a month… now i looked up scleraderma and got all this stuff… it is scary. WHAT IS THIS? what is wrong with me and why did no one tell me earlier? Saffie ————— mjmis…@athena.louisville.edu Private email welcome. AOL Instant Messanger: SaffAria ICQ: 36558129 MY WEB PAGE http://www.louisville.edu/~mjmisu01/
Response:
Saffie, what’s a "UA" test? — Amie —— http://www.ihavescleroderma.com ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/ Search, Read, Discuss, or Start Your Own
Response:
On Sat, 8 May 1999 ayau…@forcemail.com wrote: > Saffie, what’s a "UA" test? > —
urinalysis (the pee in a cup test) …. bleck i still don’t understand what is wrong with me… what caused this? how do i make it better? saffie
Response:
Take the advice of Ed, find a good rheumy, let them run test or review yours. What causes this? If we knew that we would have a cure. Again Saffie, EDUCATE yourself. Those who do understand what is going/wrong with them. Have you been tested for Chronic Fatigue Syndrome? Some of your symptoms are matches. Love and Hugs Colleen – Hide quoted text — Show quoted text -Sapphyre Aria McCallister wrote: > On Sat, 8 May 1999 ayau…@forcemail.com wrote: > > Saffie, what’s a "UA" test? > > — > urinalysis (the pee in a cup test) …. bleck > i still don’t understand what is wrong with me… what caused this? how > do i make it better? > saffie
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