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Trying to find diagnosis


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#1 ozzy69

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Posted 02 July 2008 - 12:04 PM

Just wanted to say hello everyone. I try to read daily, learned from all of you and listen to updates. I have not been diagnosed with Scleroderma but my rheumatologist thinks I might have it. I have a negative ana, low sed rate, so my blood work does not point me in that direction. I do have IC, Raynalds ( Bad), fibro, IBS and PFD. My rheumatologist has set an appointment for me to to go to the University of Lexington for second opinion. I have been having more joint pain and one ankle hurts to walk on it sometimes. A lot more stiffness. This week I have been sick to my stomach, I believe I ate something that was not good on sunday. Sore thoart and tons of heartburn. My raynalds have been a little better since he put me on plendil. I have a very shiny face and forehead. Sometimes I read post and can relate so much and than other time I say to myself " no, I don't have it". Hopefully I will find out more on July 31st.

Thanks

#2 truman

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Posted 02 July 2008 - 12:22 PM

Hi Ozzie,

I used to read the posts and cruise the internet and constantly say to my son, but no, I don't have this, that, this and that. It's basically not a cumulative thing for a diagnosis but rather a here and there that truly brings the whole diagnosis together.
Tru

It is what it is...........

#3 ozzy69

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Posted 04 July 2008 - 01:32 PM

Tru,

Thanks for your reply!! Happy 4th!

Nina

#4 Snowbird

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Posted 04 July 2008 - 03:48 PM

Hi Ozzy69

It has been a little while, sorry to hear you're having such a hard time just now...it's nice to see you back! You've sure been going through a lot lately. I'm glad that you are at least getting a little relief from your Raynaud's with the new medication.

Tru has a a very good point...these rare things can sometimes take a long time to sort out....
Sending good wishes your way!

#5 ozzy69

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Posted 05 July 2008 - 05:50 AM

Thanks snowbird. I do agree it does take time. Some days it is so frustrating because sometime new happens. I have been having alot of pain in my ankles. My left one more and It is hard to walk on it sometimes. Icthing some days that drives me crazy. Atrax works well for that. I will be glad when I get to see specialist at the end of the month. Hopefully I will not walk out of there with no nothing.

Thanks again
Nina

#6 luvbnmom3

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Posted 07 July 2008 - 01:19 AM

Welcome! It sounds like you have a good Dr. that is paying attention & sending you out for a second opinion. I hope you get some solid answers at the end of the month!

From what I've read over the last year, it seems that no Ssc patient is alike, symptoms range all over the place from mild to extreme & they present themselves differently in many & not everyone experiences the same ones.

Hang in there!

#7 ozzy69

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Posted 07 July 2008 - 04:16 AM

Thanks luvbnmom3!

Hopefully I will get some answers at the end of the month. My body is trying to get over some bug I got a week ago. It takes me so long to feel better. My IC seems to be acting up so I am getting a bladder install this week. I went out of town over a week ago and I started to feel bad on the way home. It could be that I over did it or I just pick up some bug.

My heart goes out to all that have been dxed and those whom can't out what is going on with their bodies. It is nice to be able to read everyone's experiences.

Nina

#8 HouckRN78

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Posted 09 July 2008 - 05:54 PM

I am also trying to nail down a diagnosis and so very much sympathize with you. How did you get your doctor to take you seriously? Being a nurse myself I thought he would understand that I'm not making this stuff up, especially after positive ana/scl70 tests! I am trying to get up the courage to demand to see a specialist in Chicago or find a new doctor. I sometimes wonder why they (doctors) are so resistant to make referrals to specialists. I suspect that since I take an antidepressant they dismiss my symptoms as psychosomatic, but I'm just venting a bit! I hope you keep searching. It sounds like your symptoms are quite serious and deserve further investigation. Best of Luck to you!