View Full Version : delayed dx - what to expect?

03-09-2009, 07:39 AM
I have a question for those of you for whom it took years to diagnose - did the disease progress during that period or not?

My ANA is positive and a positive dsdna to go with it, but mild symptoms - some swelling of the joints in hand and feet, a few mouth sores that don't hurt, low fever (99.8), dry eyes. Super fatigue. All managable (though the fatigue is the worst of it) Rhumy didn't want to diagnose me, she said (it's true on that day) my swelling wasn't obvious to her and "anybody can come in here telling me they have symptoms" I don't even know where she is coming from on that - I'm lying to her??? anyway - it's ok because if I have 'lupus-lite' so be it - my q is will it stay lite? I'm 48 I've heard the older one is at dx the lighter it is.

If it take sthe next five years to get dx what will be happening to my body during this period? should I seek another opinion? What was the five years like for you guys that had a delay in dx?

oh, I get a rash in the sun too - agian meaningless to the Dr because I didn't have it the day she saw me.

thank you for your time and replies -

hope you are having good days -

03-09-2009, 11:50 AM
Unfortunately yes...it took almost a year before I got a definitive diagnoses. By then, I had lost almost all of my hair; I had mouth ulcers the size of quarters and nose ulcers that bled; I had open raw lesions on my hand that hurt so much, I couldn't even hold a toothbrush without crying from pain (I had to wear gloves to drive my car because I couldn't hold the steering wheel due to the sores on my hands); I had to buy shoes 2 sizes larger due to the lesions on my feet; my muscles and joints felt as if I had lifted weights and torn cartilages; I was so fatigued that (as Rob describes it) I felt as if I were under a lead blanket; my face was swollen from Prednisone and I had open raw lesions in the butterfly rash & all over my face.....I was constantly nauseated and couldn't eat (not that the lesions would let me eat anyway)....in short....I was a MESS!!!
The good news, I continued with my medical treatment; kept all of my doctor's appointments' made necessary life style changes; tried to exercise regularly and eventually all the lesions healed, my hair grew back, the muscle and joint problems subsided and I was able to maintain a somewhat normal life. After a bit more time, I was downgraded to mild lupus and have pretty much remained that way.
I still suffer fatigue, joint and muscle pain, occasional oral ulcers, and flare-ups - it's just that I can manage my disease with a few less medications than I had to use when trying to get the disease under control.
Hopefully, this will not happen to you. Bear in mind, I was diagnosed back in the 80's, the process and treatments have come a long way since then. It can still take a while to get a diagnosis (due to the disease itself), but newer medications can get you to a manageable state a bit quicker.
I wish you the very best.
Peace and Blessings

03-09-2009, 12:17 PM
Hi karenboss!

Funny how you pointed out that it didnt matter to the dr about a rash cuz it wasnt there when you were at your appt. Boy am i experiencing that time and again. My husband was so happy that i was flaring one day when i had an appt to a new specialist! He didnt like seeing me in that kind of shape but he saw the difference in the way he treated me compared to the drs who saw me when i wasnt flaring. That so far has been the only dr who said "girl you arent right and were going to help you"! Wow what great words those were!

I just wanted to say that arthritis showed up in me 10yrs ago but subsided in a about amonth. Then 3 yrs ago it got really bad again and thats when other symptoms started showing up too. In the past 6 months my symptoms are REALLY BAD. I had to stop working too. I just recently got a bumpy rash on my face. Thats the newest one, along withseeing floaters. That really scared me because ive always had perfect vision.

Just wanted to share a little of my story with you and Good Luck!

03-10-2009, 04:01 PM
wow - Suzie - that sounds so terrible! I actually feel pretty guilty complaining because my symptoms are pretty tolerable -

I guess time will tell then.

For me though I did have a round of this back in 1995 and it went undiagnosed - skin rash, and joint issues. I struggle for a couple of years like that then it went away - I don't really know if it is related or not. It was shoulder, wrist, jaw, the ball of my foot - now it's fingers,hands and feet. ;/

Lucky - glad you got in at the right time - I guess the disease will define itself in time, right? so I guess just see what happens.

thanks for your company, guys.

03-12-2009, 11:41 AM
I know that waiting to see what happens can be frustrating and scary. But, it is more due to the nature of the disease itself than to the inability of the physicians. The disease can evolve so slowly and never evolves the same way. Also, Lupus can mimic so many other diseases (both in symptoms and lab results) that doctors are loathe to make a quick diagnosis.
We are here to help you through this "wait and see" process and will try to answer all of your questions while waiting:yes:

Peace and Blessings

sick n tired
03-12-2009, 01:55 PM
Hey Karenboss,
My flares built in intensity...but it wasn't until I changed doctors that I was able to get some relief.

Lucky7...That is just what happened to me this last February. I really didn't feel like getting up and going to this doctor, but I am glad I did. Even then he started to dismiss the symptoms as Bronchitis or something that another doc had been treating me for. It was the nurse who talked to him and as I was leaving he decided to have me go get a CT scan....Ends up I had pneumonia and pericardial effusion. When I was sent back up to him he was totally different towards me.

03-12-2009, 04:31 PM
Wow sickntired. Im glad you and the nurse PUSHED it. Ive learned the hard way that is the only option with MOST of the drs ive seen. My eye dr did a GREAT job from my first visit and it was a weird feeling to have that happen. I couldnt thank her enough and she felt bad cuz she told me she knows with this illness youre not taken seriously enough by so many people(DRS). She says shes here to take care of the part of my body shes responsible for as my caregiver. It was nice.

03-13-2009, 02:08 PM
sickntired - shesh - what a terrible way to get respect! this dr was dismissive - like I was a fraud. So stupid.

saysusie - thank you for being there - I truely appreciate it.

Lucky7 just glad someone has a positive experience with the dr!

simmering along here... stupid tired - hard to function like this just wnat my nap.

03-13-2009, 03:25 PM
Hi Karen!

Doctors have put myself and others through so much. The good ones are literal lifesavers, the bad ones are worse than a pimple on yer buttox.

I went through 5 doctors to get the first lupoid manifestation Hashimotos thyroiditus diagnosed. The first 4 said things like; "you just need a hobby", "You just need to lose the weight" (I gained 40 pounds within 3 months-duh), "you need counseling", Chiropractor; "you need to let me hang you upside down on my cool machine" Alternative health care practicioners; "you need these pills and these pills and these pills"....

#5 was a woman doc. I had told her the same things I told all the others, "my mother had Hashimotos." Lucky #5 said "well lets check your thyroid function." Now how hard was that! It has been 24 years and I am not the same naive patient. If you feel you are not being answered, you have the right as a patient to find a doctor who can.