The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=29&m=3744450
Posted By : RBC_0821 - 11/18/2016 2:26 PM
Hi everyone,

This is my first post here. I have been sick on and off for at least 10 years. 2 years ago I developed severe secondary Raynauds in just a few fingers. I was briefly hospitalized, tested for everything (ANA, antibodies, RF, etc) but all came back negative. I had few symptoms at that time so they just dismissed it as an odd case. Fast forward to the present. about 9 months ago I started gaining weight rapidly, feeling sick tired and feverish often, trouble working out, lots of body pain, etc. Gradually worsened. In the last 3 months, I have developed what looks like a classic butterfly rash on my face, HORRIBLE joint pain that prevents me from doing most activities, constant fatigue and pain, headache, mouth and nose ulcers, numbing and tingling in my hands. My joint pain is horrible in my knees. They swell terribly, as do my hangs and fingers. The light sensitivity has increased just in the last month, as has the butterfly rash on my face. It comes and goes pretty quickly but is increasing in occurrence.

1 month ago I finally found a great GP and he found that my TSH levels were crazy elevated. After an ultrasound I was diagnosed with Hashimotos. Started 88 mg levothyroxin.

A few days ago, I was back at his office still feeling horrible. Terrible GI problems, aches and pains, joint swelling, trashy elbows. I never cry and I started tearing up in his office. Just want to some answers.

WELL, he ran a bunch of lab work and my ANA test came back positive (1:160 and homogenous pattern noted in the comments suggesting lupus) AND I had a false positive syphllis test meaning antibodies are present. He won't diagnosis lupus, as I see a rheumatologist in a week and he wants them to make the call.

My fear at this point is that even with this overwhelming amount of evidence, I will be dismissed or they won't claim to have a clear diagnosis. I know it sounds crazy but I have had horrible time with doctors taking me seriously up until this point.

Does this sound like a pretty clear "cut and dry" case of lupus? Or is there something else I should be looking into? Any input, advice would be appreciated :)

Thank you!

Posted By : Lynnwood - 11/18/2016 2:44 PM
Lupus can present in thousands of different ways, so unfortunately there is no such thing as a "cut and dry" case. The good thing is that rheumatologists are aware of the complexities of diagnosing Lupus, so they often start treatment immediately and use how you respond to specific treatments as part of the diagnosing process. (Also good that the GP knows enough to know he's not the expert at diagnosing or treating Lupus.)

Since you've read Lupus 101, you've seen the list of symptoms generally used for diagnosis. Take with you to the rheumy appointment a bullet-ed list of symptoms you've had, both things on that list plus anything else out of the ordinary. Include when you had the symptom and how long it lasted. Anything in the last 10 years is fair game!

Don't worry about not getting a diagnosis at the first appointment. Like I said, many rheumies try some treatments first before confirming a dx. Expect something like Plaquenil (a disease-inhibiting med) or Prednisone (to control inflammation). Or the rheumy might take lots of blood and see you again in a few weeks.

Meanwhile, try to make sure you drink enough water, eat protein & veggies, and get deep restorative sleep! These things always help us heal and feel better. Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : BreRosie - 11/18/2016 2:44 PM
Hi. I felt the same way you do about being taken seriously by docs before my diagnoisis. I was even told once that it was all in my head. I was diagnosed w/ lupus this past July. about 2 months before I started to get a rash whenever I went out in the sun on top of always feeling sick with on and off fevers, body aches. It was like the flu without the cough. I started researching online after losing faith that the drs. would figure out what was wrong. Then after reading about lupus it all clicked. I went to my doc, showed her the rash and demanded to see a rhuemy. I know this is stupid but a week before my appt. with the rhuemy I sat out in the sun for hours. I made myself break out in a rash and sooo sick. I wanted to hold on to that rash as it was the first and only physical evidence I had that it was not in my head. He put me on hydroxycloroquinne before my blood test were even back in. I remember being afraid that they would find nothing and I would be back still feeling crummy without any answers.Turns out I was right. I would suggest writing down as much about your symptoms, past and present and taking photos of any rash, sore or blister you get. Best of luck to you! and please keep us updated . I hope you get answers and feel better soon.
Breanna

Thyroid disease 2015, Lupus and Sjogrens July 2016 and Fibro October 2016
I'm Just gonna keep on smilling

Posted By : RBC_0821 - 11/18/2016 3:18 PM
Thank you both for the responses - I am especially glad to hear they usually start treatment right away as a diagnostic tool. I think maybe that would have been a better way to articulate my concerned. I told my GP I was worried about going to this appointment, them taking blood, then sending me home for 2 and 1/2 more months with no treatment or help. I am absolutely miserable and falling back into a depression I struggled so hard to come our of!

I actually have a very detailed journal I started about 3 months ago. :) Even included the problems I have had the last 10 years, and of course the problems picked up significantly in the last 2 years.

I've thrilled to have such a wonderful GP and he's given me lots of hope for treatment. Just need to reign in some of these worries. Thank you both again

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer