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8 replies to this topic

#1 gemjar


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Posted 24 February 2008 - 07:23 PM

Until I see the rheumatologist for the first time !!!

I am very nervous and scared that he will send me away without any answers. My fingers aren't as bad at the moment and I am hoping they will puff up big time by Thursday, just so I know that there is something visable to show him. (crazy hey)

I have a list of symptoms that I'll give him, even the trivial stuff, so he can descide whats relevant and what's not.

A question for you all ! Is having irregular bowel movements a symtom at all ? This has been happenning for the last 4-5mths and when I try to go, often the pain is so accute that I end up vommitting ! Is this something I should put on my list, what do you think ?

Hope to have some answers soon,

Karen :)

#2 jefa


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Posted 24 February 2008 - 10:08 PM

Hi, Karen

I remember my first time with the first rheumatologist. And my first time with the second rheumatologist. I was better prepared the second time and he seemed receptive to the complete list of symptoms I gave him (including the irregulary you mentioned). Better more info than not enough. Good luck.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 relicmom1


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Posted 25 February 2008 - 02:54 AM

Good luck with your appt!!!! I am now with my third rheumatologist. The second diagnosed me, but that's as far as he went!! :P ABSOLUTELY TELL THEM EVERY SYMPTOM, NO MATTER HOW TRIVIAL IT MAY SEEM TO YOU!!!!!!!!!!!! Some of the symptoms we have start out very small. It takes all symptoms in diagnosising (?sp?) us. So, good luck and let us know how it goes!!
Peace :)
Barbara aka relicmom1

#4 Sweet


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Posted 26 February 2008 - 08:25 AM

Hi Karen,

Good luck! Arrive as prepared as you can, with a list of ANYTHING that is going on with you. This is important whether you think it's related to sclero or not. The more information you can give, the better he/she will be able to help you.

Looking forward to hearing how it goes.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 Fictionite


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Posted 26 February 2008 - 09:04 AM

Hi, Karen... Yes, Yes, Yes! Tell the doctor everything - even if it doesn't seem related. The onset of sclero for me included the worst constipation of my life for six straight months, which was then followed by the lovely, opposite problem. I read somewhere on this website (sorry I can't tell you exactly where) that this is relatively common. Also, the swelling in my hands mysteriously vanished right before my appointment, but he took one look at my hands/nails and diagnosed Raynaud's immediately. There is more to it than just the swelling, and the doctor will know.

I created a complete medical history/record before seeing my sclero expert for the first time. I was so nervous, sick and stressed from seeing so many doctors who didn't have clue that I was afraid I would forget something. I tried to include the date the symptoms started and any changes. I also try to update my record every few weeks or when I notice a new symptom or change. I broke it down into categories with descriptions for each one like this:
- Constipation
- Stomach
- Urinary
- Body Swelling
- Rash
- Hands
- Breathing
- Fatigue
- Eyes
- Joint Pain
- Appetite
- Skin/Hair
- Throat

My record is now a 7-page document, but it has helped me in more ways than one because I now have my own medical file that I control. I realize that this might be over the top and rather anal, but anyone who has been through countless doctors who ignore the symptoms or randomly pick one or two to treat knows how valuable this info can be. This also helps when you have to change doctors or see a specialist. You would be shocked to know how much of the info that you give your doctor sometimes never ends up in the chart.

I hope my example helps a little with your symptoms list. Good luck, and let us know what happens.



#6 Snowbird


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Posted 26 February 2008 - 11:58 AM

Hi Karen

I agree too, I have seen one rheumatologist and now he's leaving, so I go to see a new one in July....a list will be a great thing for me to have too (I am also in the process of making one for my new visit)...I know with me, things have been subtle and happening for many years so I'm really going to have to try and remember what year what started, etc....good thing I have lots of time to try and figure that out! :rolleyes: Good luck.
Sending good wishes your way!

#7 Michelle2


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Posted 26 February 2008 - 12:23 PM

Wow great idea with breaking your medical history records down in categories. I am going to try that for myself thanks again, Fictionite

Yes, Karen write down EVERYTHING! Nothing is too petty.

Keep us posted!
Take care and stay warm,


#8 gemjar


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Posted 27 February 2008 - 12:27 AM

Thanks everyone for your replies and support. My appointment is a 6hr drive away, so therefor will be gone a couple of days. I will post again when I get back and hopefully have some news (good or not) to tell.

I appreciate your warmth and sincerity.


#9 SpaceysChick


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Posted 01 March 2008 - 12:16 PM

Good luck Karen! Things will go well for you. Just tell them everything and hopfully someone will listen!