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Too many symptoms still no diagnosis


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#1 Christie

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Posted 28 June 2008 - 07:06 PM

My first post! I am 36 years old and a Registered Nurse. I have a lengthy health history , dating back over 12 years. But since fall I developed severe Raynauds and a persistent fingernail infection. 2 antibiotics and 2 antifungal meds later I continue to have deformed fingertips. Just today I noticed I have 2 calcinosis now developing on the tip of my pinkie finger. I have on and off hand swelling and mostly wake up tight and tingling. I have been seeing a rheumatologist for about 6 mos. She says-I have Raynauds and fibromyalgia. I have been pretty honest with her and my dermatologist that I really feel it is Scleroderma. But I have a neg. ANA and normal Sed. rate.
I have been itching allover-when my antihistamine wears off for years when I lie down I cough all night & practically drown in fluid that gets caught in my throat. This too I have done for many years.
8 years ago I had tissue removed from the outside of my bowels & uterus and the biopsy result said "tissue of unknown origin" Dr. thought it was going to be endometriosis but Lab said no, but could not identify all that tissue that should not be there.
I have had severe disabling IBS with bleeding for years. Colonoscopy just shows mucosal changes. Gastro says not significant.
I so badly need a doctor that will proceed to give me a real diagnosis and treatment plan. As a hospice nurse I see people die and never get an answer why or from what, all the time. Thank goodness, they are usually very old. I am 36 and I want and deserve and have paid good money for real answers. I am angry and scared. I already Know what I have.Why won't anyone else tell me? Any suggestions or a DR. recommendation would be greatly appreciated. So would an understanding ear that doesn't think I am a crazy hypochondriac. By the way. I have skin breakouts that ooze clear fluid often +they are quite painful & scar my face. Anyone else?
I am anxious to hear from you all,
Christie

#2 jefa

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Posted 28 June 2008 - 08:31 PM

Hi, Christie. Welcome to the ISN Sclero Forums. You have found a terrific place for information and support while you pursue a diagnosis. Of course we are not doctors here and even if we were, would not be able to diagnose you without the appropriate tests and clinical evaluation. I do understand your frustration, however. It would probably be a good idea to find a rheumatologist who specialises in scleroderma. You will find lists for many parts of the world on our Scleroderma Experts page. You may also find our page on Calcinosis useful: Skin Involvement: Calcinosis


Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 bookworm

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Posted 28 June 2008 - 08:42 PM

Hi Christie,
I feel for you! Sometimes getting a diagnosis is the hardest part! Jefa was right about finding an expert. Someone who specializes in scleroderma is your best bet for getting a correct diagnosis. There are some good ones located all over the country and they are llisted on this website.
Good luck to you! Welcome to the forums. You've come to the right place for sympathetic listners!

Mary in Texas

#4 Margaret

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Posted 29 June 2008 - 01:27 AM

Hi Christie ,

It sounds like you need a more sympathetic rheumatologist or a sclero specialist. Just a note, though, that even with a positive ANA and high sed rate, you don't always get the sclero diagnosis. The point is to find a doctor willing to treat the symptoms.....they aren't in your head!!!

Take care, Everyone.
Margaret

#5 Snowbird

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Posted 29 June 2008 - 03:56 AM

Hi Christie

I wanted to welcome you too. Sorry to hear you're not getting any answers. Sadly, that happens alot but do not give up. I agree with the others, it's really important that you find yourself a good rheumatologist/specialist and Jefa has provided you with the link to find one in your area. I don't have anything oozing fluid yet (but I don't have calcinosis either). I definitely scar now and have for many years; for any minor cut I cure really dark brown, etc (never used to when I was younger, used to heal properly). My hands also tingle at night sometimes and wake me up (it's been happening about 2-3 times a month) and I have minor swelling in them all the time. My ANA is positive for the centromere pattern (points to CREST). You are definitely not a hypochondriac! Keep posting and stick with us! There are alot of knowledgeable and helpful people here, I've learned a lot already. I hope you let us know how you make out with a specialist....and keep asking your questions here too!
Sending good wishes your way!

#6 Peggy

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Posted 29 June 2008 - 05:35 AM

I know what you are going through. There is nothing more frustrating than trying to get answers. It took over a year of different doctors and clinics before I finally got my diagnosis. Frankly it wasn't the diagnosis I was looking for but I was relieved to know it wasn't all in my head and I finally had some answers and could now deal with it.

Do you have an area of skin where there is tightening, swelling, or skin involvement that they could take a biopsy from and test it for sclero? I had that done as well as the blood tests and both came back positive. Being your blood came back negative maybe this would get you a difinitive diagnosis.

Good luck to you and you have come to the right place by coming here. Everyone here is very helpful and supportive and I don't know what I would do without it.

Warm hugs,

Peggy

#7 Guest_Sadie_*

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Posted 29 June 2008 - 11:32 AM

Welcome to the board! You will find alot of good info on here and you will meet alot of wonderful people!! Everyone has given you good advice.
I wish I could give you a big ((((((((Hug)))))))))
Sadie

#8 Michelle2

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Posted 30 June 2008 - 10:43 AM

Welcome aboard Christie~

I have had to go thru a few different dr's before I found one that I felt comfortable with and thought was doing the best for me. Don't give up and give other dr's a try. You'll find one that will fit with you and know just how to treat you. Please don't settle with the one you have.
Take care and stay warm,

Michelle

#9 CraigR

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Posted 02 July 2008 - 09:55 AM

I agree with others who recommend a scleroderma specialist. Most doctors know little of scleroderma.

You don't mention any drugs to help with circulation in your hands. There are many that can be quite helpful - different drugs seem to work for different people. It can be the difference between painful hands full of finger ulcers, and useful (if cold) hands.

Prazosin and Adalat (calcium channel blocker) made a huge improvement for me. Others have had success with nitro cream, Viagra, Cialis, Norvasc. You might search through older postings for this information.

Good Luck,

Craig

#10 Sweet

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Posted 03 July 2008 - 06:00 AM

Hi Christie, welcome to the Sclero Forums. I'm really sorry to hear of all the problems you are having. The link Jefa gave you for the experts is great. I hope you can find one in your area.



Please keep us posted!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)