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Old 08-08-2009, 09:18 PM   #1
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Touching Base

Hey everyone,

Wanted to check in, and say I got an Appt with a Rhumie from UofL which the Lupus Foundation suggested. My Family Doc was very if about me getting an Appt because of my blood tests the Dermie had done look OK. BUt with all the symptons I have I guess he thought I needed to be seen. Now I just have to wait 2 months for my appt. So in the meantime I am keeping a jounrnal of everything I experience fatigue, headaches, rash outbreaks, etc etc etc.. when they start when they stop the whole ball of wax. Maybe this will all help me out with the rhumie..any other suggestions would be great. This will be my first appt with a rhumie.

Teeha

 
Old 08-09-2009, 10:16 AM   #2
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Re: Touching Base

Hi Teeha ... glad to see you *okay*
i found some interesting documents on how to prepare for a doctors appt. i think on the LFA website under : Diagnosing lupus ... i do suggest you write down a list of all your questions and maybe write down the given answers too. if possible take someone close with you to hear what you don't hear.

i have to wait until feb to see a new specialist ... time passes quickly so just hang in best you can till then ... also if you get another rash try get a photo of it.

 
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Old 08-09-2009, 06:09 PM   #3
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Re: Touching Base

I'm glad you got the appointment. I agree with what Angel said. Document....document....document. And pictures are a great idea.

 
Old 08-09-2009, 08:06 PM   #4
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Re: Touching Base

Hi, Teeha. Another thought is to write a one-page condensed *lifetime* medical history to take along. This can be eye-opening to a good rheumie, because in lupus, certain things are common in early life in people who later develop lupus. The "sticky post" titled "Alternative Criteria" lists such things (look for this sticky post at the top of thread list).

My rheumie's staff asked me to fax a brief lifetime medical history, in my own words, before my first appt. I walked in to find him reviewing it; and his first utterance was to the effect that, with my history, what ELSE could it be BUT lupus---but of course he re-did blood & urine tests, and also sent me to "his" dermatopathologist for a last deep-punch skin biopsy with immunofluorescent stain tests. (BTW, those stain tests can be VERY useful in Dx'ing lupus-specific rashes.)

He was only the second dr. I'd ever seen who scrutinized my (ridiculous) lifelong history, which made me immediately respect his thinking. Anyway, I'm so glad you're seeing a rheumie. Stay in touch & hang in there, OK? Best wishes & a big hug, from Vee

 
Old 10-17-2009, 02:14 PM   #5
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Re: Touching Base

Hey VeeJ..... well my Brief Medical history goes back to Day one of life. Was born with a stomach disorder. lol Anyways at this time the rhumie is a bust..staying with my GP and he is treating all my symptons. Eaiser sonce I was diagnoised by the Dermy via skin biopsy. (the punch test), Got tested for and resolts back, got hypothyroidism and fibromyalgia. On new meds for both... positive results so far. Finally I have energy and little pain. Big hugs

tee

 
Old 10-17-2009, 05:08 PM   #6
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Re: Touching Base

Do I understand? You cancelled your rheumy appt?

 
Old 10-18-2009, 03:27 AM   #7
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Re: Touching Base

PLEASE think about finding a new rheumie --- going forward even if to do the tests and say *all good* --- your GP may be able to give you a name (ask him) even if you aren't going right now!

so happy that you have energy + little pain! ***BIG hugs***

 
Old 10-18-2009, 10:48 AM   #8
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Re: Touching Base

Teeha, I think I'm confused, too! Did the dermie diagnose you with lupus based on deep-punch biopsy? And does one of these two doctors---your dermie or your GP---have you taking meds appropriate to whatever degree of *lupus* you have (meaning systemic vs. some milder version)?

Hope you're having a good weekend, hugs, V.

 
Old 10-19-2009, 08:54 AM   #9
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Re: Touching Base

no kept the rhumie apt, was a waste of my time and money,
HE said sorry nothing I can do to help you at this time. Cant re run blood test till next yr.... went and seen my GP then.

 
Old 10-19-2009, 09:01 AM   #10
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Re: Touching Base

VeeJ,
LOL How can You be confussed? Even I cant keep things straight most days and this is my life! looool Ok serioulsy I went to the Dermie who did punch test on the rash on my face. Came back Tumid Lupus or TLE 100% positive. He then asked all the symptons re: the criteria list. In which I have majoroity of them he asked about. He ran the general 8 tubes of blood to test. That came back ok. He siad I am Borderline SLE. I had a GP appt who sent me to a Rhumie.... WHo said nothing I can do for you..so back to the GP who I told ok earn your money and treat my symptons since no one else will. So I guess my blood work is that good old False Positive syndrome. I have it but I dont have it But I do have. Now how can you be confussed????

Teeha

 
Old 10-19-2009, 09:40 AM   #11
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Re: Touching Base

Hey VJ
Was doing some more reading up on the TLE, and heres something to make it a bit less confussing for my diagnoises... Lupus tumidus is similar to Jessner lymphocytic infiltrate, in which diagnostic criteria for lupus are absent. Was doing research on this now, and found some great info on the tumid lupus and the probable reason for my diagnoises for the sle.
Tumid lupus erythematosus is a cutaneous disorder. In the study provided 1 in 15 ended up with SLE positive blood tests results. I have a great link for this information but know I can not post that. I am however going to print this info out and bring it to my GP on my next visit in 3 weeks. So now to gte my head wrapped around the cutaneous part of Lupus. Boy am I getting my confused as I go but at the same time things are clearing up in my mind abit.

Teeha

Last edited by teeha; 10-19-2009 at 10:24 AM.

 
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