what do I do first?

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green_eyed_girl
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 10/10/2007 3:51 PM (GMT -7)   
Ok I am finally getting on my husbands insurance and I am ready to start the task of hunting down doctors in my area for help with my issues. I have no idea where to start. My problems started many many years ago and along the way they have done tests ect....I just don't know what is relevant at this point in my life. Does any of this make any sense?? I don't know where to start. I don't have a regular dr. So what do I do first? Do I find a dr. and go in for a physical and then while there tell them all my baggage problems? Do I go straight in with an appointment for a specific ailment? Lord what do I do? I am lost. And what about all those "old" things from years gone by...do I go and hunt down all those old records so I can take them with me---or are they irrelevant now? The reason why I am wondering is because years ago when I first went to the dr. with my first problems they were headaches, constant diarea, hair falling out, and pain in my body like my bones where being pulled out. The dr. at the time said it was because I was a new mom and it was hormones. (well all these yrs later I have the same issues times 10). So I didn't know if I should try to have those dr. visit papers to show that 14 yrs ago I had these problems. Then later it was I had IBS. Then the headaches didnt stop and I started passing out...after MRI's I ended up with some kind of clot in the brain....i just don't know if this stuff is relevant or just forget it all and start from scratch. It's just I have fought this pain for so long and I hope it don't take years to find help now. The flares are getting so bad and the pain is more than anything I have ever experienced.
Thankyou all for your time and help
Joy

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/10/2007 4:20 PM (GMT -7)   
Hi Joy,

Have they done blood work for APS? or Anti-cardiololipids?? Both of these issues cause thick blood which can cause strokes and other problems as well as headaches. Pretty simple to check.

You sound overwhelmed . . .sorry this is so hard . . . but you need to keep good records of your symptoms which means that you need to know that every little thing is a clue for the doctor to help piece this together. There is a really good post in the topic "Lupus Resources". Start there and read the post about suggestions to new members. There is a link in my signature. Along with a link to the Lupus Foundation website which has lots of good info.

If you don't have a primary care doctor (pcp) you can start there, but if you do have good reason to think it is lupus, you eventually need to find a good rheumatologist who is knowledgeable about lupus. There is another link in my signature to find a Lupus Chapter near you. If you call them or email them, they can provide you with a list of rheumatologists in your area who want to treat Lupus patients.

Knowledge is power so learn all you can and bring good notes with you. I recently did a long post on how to make notes for a doctor appointment. If I can find it, I'll post it here.

The others will be along with more suggestions . . . but reading lots here will really help.

Keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/10/2007 6:09 PM (GMT -7)   
Hey Joy . . . I found the post. In this topic, I posted an outline for making your written notes to take to the doctor. Sounds corny and overdone, but it really does help and the doctor's love it because they get it all in one breath. Here is the link: http://www.healingwell.com/community/default.aspx?f=29&m=927330

I hope this helps!

Blessings!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


green_eyed_girl
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 10/10/2007 6:17 PM (GMT -7)   

thankyou rosie for the help. I don't have a regular dr. so I guess I should start there. When I call for an appt what should I say? That I want to have a physical?  And the questions about the bloodwork you asked...I have no idea if they did those things back then or not. Should I try to get records from back then to show the new dr.?

Thankyou so much for helping me sort this out. I hope I don't seem ignorant --I just want to be prepared the best I can so I don't waste a dr.'s time or mine.

I am pretty sure I have lupus. I have all the symptoms that are on the list..except for the blood test...i dont beleive that has ever been done.

thankyou again.

hugs---JOY


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/10/2007 6:27 PM (GMT -7)   
I'd make the appt for a physical. Then during the appt you can mention your symptoms and that you'd like to be evaluated from scratch due to loosing many of your past records.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/10/2007 7:46 PM (GMT -7)   
Hi Joy:

Welcome to our forum, the others have given you plenty of great advice. I agree with Lynn that you should get an appointment with an internist and have them run some basic tests first. Once you get those tests results back then have the refer you on to the specialist.

I hope that you get some answers real soon, and that you're started on a treatment plan that helps you a lot. Please let us know how things turn out.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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