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NurseSusan
02-12-2013, 09:40 PM
Hey everyone!
Just a curiosity on how long it took to get your "official" diagnosis...
I have been to 8 different specialists in the past 3 months, and all I know is I "definitely" have skin lupus (based on skin biopsies), and "probably" have systemic lupus, and I "might" have other autoimmune diseases as well....
I know all autoimmune diseases are fairly complex and hard to diagnose.
My dad has Multiple Sclerosis, and I remember it took about 6 months before we knew "officially".. I think this is fairly common.
Any input is appreciated :)
Thanks.
Susan

Nonna
02-13-2013, 01:35 AM
I've been treated for possible not quite sure Parkinson's since 2009. The lupus dia was easier given my medical history. I think malpractice suits have bmade doctors Leary to confirm things.

Good luck

Derrie
02-13-2013, 06:27 AM
I have gone two years without a diagnosis beyond "this is something autoimmune."

Yesterday, my doctor even told me he didn't think I would be getting a definite diagnosis anytime soon.

AI disease is truly squirrely when it comes to diagnosis. My best advice is to find doctors who will treat AI without a solid, specific diagnosis, and who will treat your symptoms. And then, we just have to be patient. Not let the lack of diagnosis take over our lives. For example, I see a chronic illness counselor who helps me grapple with the stress I sometimes experience from being undiagnosed and seeing doctors all the time.

NurseSusan
02-13-2013, 09:11 AM
Yes, it's very frustrating...
But I am trying to tell myself that it really changes nothing having an "official" diagnosis...
My rheumy tried to start me on Plaquenil, but said that since I have cardiomyopathy, I will never be able to take it.
And so I asked what other treatment can I take, and she said there is really no medication for me to take unless I have end stage organ failure.
I just have to keep wearing my sunscreen and take Ibuprofen for my joint pain.
So, even with a diagnosis, it changes nothing.... But, she is a very thorough doctor and sends me to several specialists to treat and test my different symptoms.
I guess I just want to know what I have so that I know what I'm fighting against, ya know?

Derrie
02-13-2013, 09:21 AM
Yes, it's very frustrating...
But I am trying to tell myself that it really changes nothing having an "official" diagnosis...
My rheumy tried to start me on Plaquenil, but said that since I have cardiomyopathy, I will never be able to take it.
And so I asked what other treatment can I take, and she said there is really no medication for me to take unless I have end stage organ failure.
I just have to keep wearing my sunscreen and take Ibuprofen for my joint pain.
So, even with a diagnosis, it changes nothing.... But, she is a very thorough doctor and sends me to several specialists to treat and test my different symptoms.
I guess I just want to know what I have so that I know what I'm fighting against, ya know?

Oh, I know exactly what you mean about wanting to know what you're up against. That is the one thing that can drive me nuts if I think about it too much. That, and wishing I had some way to know what might be coming my way.

It's too bad about the Plaquenil (it really helped my skin lesions), but it's good that they're making sure you are well cared for.

After my symptoms first started showing up, it took almost a year and a half for me to come to peace with not having a diagnosis. Part of this involved seeing a counselor, and part involved just plain time passing and getting used to the idea of being a medical mystery. I'm sorry you're a part of Team Unknown Disease-- no one joins this team willingly!

ItsLupus2007
02-14-2013, 09:05 AM
Yes, it's very frustrating...
But I am trying to tell myself that it really changes nothing having an "official" diagnosis...
My rheumy tried to start me on Plaquenil, but said that since I have cardiomyopathy, I will never be able to take it.
And so I asked what other treatment can I take, and she said there is really no medication for me to take unless I have end stage organ failure.
I just have to keep wearing my sunscreen and take Ibuprofen for my joint pain.
So, even with a diagnosis, it changes nothing.... But, she is a very thorough doctor and sends me to several specialists to treat and test my different symptoms.
I guess I just want to know what I have so that I know what I'm fighting against, ya know?

It took me 6 days from actually getting the original rheumy lab request done,2nd appt and confirmation of secondary lab set results.

I understand that your Dr is thorough in the fact that she has no issue referring you to other Drs for the testing/exploration of multiple system/symptom complaints but to be told that there are no other medications unless you have end stage organ failure is not correct.

You may have to try several until you find one that you tolerate well but there are medications available that will help with joint,skin,pain and other complaints that go with this illness and you don't have to be at the end stage of organ failure to receive them.That is the purpose of using the medications like prednisone,Imuran,Arava,MTX to suppress the immunes response and keep it down enough that your immune system isn't allowed to rage out of control.

If this is her attitude you may want to investigate pursuing a second opinion to see if a second rheumy can provide any additional information or alternatives that she is not other than referrals to other specialists.That would not be pro-active enough for me.

Be well.And welcome!

Mica
02-14-2013, 07:15 PM
My doctor just looked at me after like 5 minutes and said lupus. I was lucky in that aspect because I have the classic lupus, you know where the butterfly rash is prominent. I am so glad I didn't have to wonder what was wrong with me, i'm sorry your having to go through all that on top of being sick.

NurseSusan
02-16-2013, 09:26 PM
My doctor just looked at me after like 5 minutes and said lupus. I was lucky in that aspect because I have the classic lupus, you know where the butterfly rash is prominent. I am so glad I didn't have to wonder what was wrong with me, i'm sorry your having to go through all that on top of being sick.

I also have a prominent butterfly rash, and even then the rheumy made me go and have it biopsied to be 100% sure. And I know I meet the criteria to have systemic, but I guess she thinks that my blood work would be worse?

Mica
02-17-2013, 12:44 PM
I also have a prominent butterfly rash, and even then the rheumy made me go and have it biopsied to be 100% sure. And I know I meet the criteria to have systemic, but I guess she thinks that my blood work would be worse?


Thats weird I don't remember the numbers but my blood work was really bad so even that finalized my diagnosis.

aimee.x
02-19-2013, 06:10 PM
I had a slight rash at the time that I first went to my gp and I didn't really have other symptoms except for feeling tired (I thought it was just school). He wouldn't tell me why I needed to do a blood test and I thought it would be an allergy or something but then when the results came he said it was lupus. Took like a week max so I guess I was lucky in that aspect.

tgal
02-20-2013, 10:16 AM
I had an SCLE and Discoid Diagnosis right away and even with seizures it took about A year for them to say SLE and over 2 for someone to admit that the seizures were caused by the Lupus (even though it was the only logical explanation).

It is amazing to me how hard they try not to give you answers

Thunda
02-20-2013, 02:00 PM
It can be very frustrating. It took 9 months of going back and forth to doctors before i was officially diagnosed. I was so frustrated I was ready to give up. Try to be patient and keep pressing for answers. Good luck.

redstringsoul
02-25-2013, 04:53 PM
I've been experiencing symptoms of joint pain and fatigue for over a decade. It took 6 years for me to even bring it up to the doctor who dismissed it and then another 4 years and 3 more doctors to get to a diagnosis of MCTD. The lupus diagnosis came another 6 months later.

n.mac
02-26-2013, 10:34 AM
I went to an eye,ear, nose and throat specialist seeking help with ringing in my ears.He sent me for a bunch of lab work and an mri.
2 days later I was referred to a ruhematologist- the ear dr had immediatly suspected lupus due to my symptums and facial rashes. The lab work he ordered were the classic for lupus and backed up his hunch.

Apparently my lab work has always been compelling as no one has ever questioned the diagnoses .
3 years later my overall health is much better although I still have tinnitus and there is nothing that can be done for that!

tomcatsgirl
02-28-2013, 01:27 PM
About 7 months or so for my dx although its believed that I have had it for ever. My kidney dx came in the late 80s and all these years it's been just that kidney issues. After my hysterectomy is when things went downhill fast. It was about a year and 7-8 months after my hysterectomy that I was officially dx'd and after I had switched providers. My first appt with my new rheumy was great. She didn't label it that day as sle but she was 98% positive. It was my next appt with her that she gave me the official dx.

Landonsmom722
03-01-2013, 03:38 PM
I am newly diagnosed at 23 with systemic lupus only. I had 7 of 11 of the criteria and they still ran TONS of tests on me before confirming. My kidney biopsy was the only sure fire thing that let them know I had a very aggressive form of lupus. I was really sick for 6 months prior so my kidneys just kept getting worse. If you think you have systemic lupus I would be sure to try and push for a kidney biopsy and a double stranded DNA test because those essentially saved my life.