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Posted 11/25/2013 11:31 PM (GMT 0)
I have gone through years of Dr's telling me that they have no idea what is wrong with me. The most recent is that it is Auto-Immune and the closest they can say is it is "like lupus" but blood work says it is not lupus.
I have chronic pain in my joints, I have hair loss, digestive problems, always sick with colds or whatever is going around, respiratory problems, was told it was Fibro by one Dr, but that there is more going on. I am getting frustrated and I'm so tired of always aching like I have the flu all over, it gets to the point where it feels like every individual hair on my head hurts.
What can I say to get my Dr's to actually pay attention to all of my symptoms? I get hives and mouth sores all the time.
Posted 11/26/2013 12:26 AM (GMT 0)
Have you seen a rheumotologist? They are the Drs for auto-immune diseases like Lupus.

One way to find a Rheumy interested in Lupus is to check out https://www.lupus.org and find your local chapter. Then contact the local chapter to see which of your local rhemies is on their advisory board. Those very often are the Drs actually interested in helping!!!

Lupus should be diagnosed by 4 of 11 symptoms (see diagnosing lupus link below), not by blood work. There is no blood tests that by itself can determine if you do/don't have Lupus or other auto-immune disorders.
Posted 11/26/2013 12:40 AM (GMT 0)
Hi confused sorry to hear about your situation. I have been in the same situation for five years now. My Dr says its both fibrous and lupus but he still isn't paying attention to the give issues that I have that are getting worse. I feel like I'm drowning and no one cares. What city are you in. It seems like lupus is still very new. It's been around awhile but drs are clueless. We gotta find a way to wake them up. I'm sooo frustrated. It shouldn't be this hard
Posted 11/26/2013 12:53 AM (GMT 0)
I am in the Eugene/Springfield area of Oregon. My Dr's haven't sent me to any specialists, they just treat the symptoms.
Posted 11/26/2013 12:59 AM (GMT 0)
I checked for you, here are the two groups in Oregon, looks like you are equal distance between them. Call & get reference to a rheumotologist near you -- regular Drs can't treat you, they've admitted they don't know what the problem is, so take things into your own hands and find some help!

Portland
Every 1st Saturday of the month at 10:30am
New location!
Call 877-774-2992 for address

Roseburg
Every Last Wednesday of the month at 5pm
Mercy Medical Center
2475 NW Stewart Prkwy
Roseburg, OR 97471
Posted 11/26/2013 1:06 AM (GMT 0)
Thank You, I will have to get a referral from my primary but I'm sure she will do that. I was just reading some of the triggers and every one of the antibiotics they have listed is one that is on a list that I'm "allergic" to because they make my mouth and throat break out in sores, at first they thought it was thrush, but now know it isn't
Posted 11/26/2013 1:07 AM (GMT 0)
Maybe we need to get together in our areas and collectively create awareness. Not for lupus but for the need for better care and understanding. People still die from this disease and its easy to see why. How can we get to the point of a cure when we can't even come up with decent diagnosis criteria. Go into your drs office and demand to see a rheumy for possible lupus and fibrmylg. Good luck
Posted 11/26/2013 1:23 AM (GMT 0)
That is exactly the purpose of the Lupus Organization having local chapters! No need to re-invent the wheel, just find your closest chapter and help out with the awareness campaigns already going!

Around here, we have a Lupus Awareness Walk every year, and it's almost doubled in size every year since it started. Slowly but surely we're getting the word out.
Posted 12/19/2013 9:51 PM (GMT 0)
Lupus has been around a long time and I still hear case after case of patients SUFFERING for YEARS so maybe we do need to reinvent the wheel. I have had several tests for lupus and they all came back negative UNTIL 12/12/13!!! Five years. And they still say its not that bad and won't give me steroids yet so I get to continue suffering until an organ fails. And I'm on rheumatologist #3. Now that I know the signs and symptoms of lupus I can see that I have had them since I was in high school and I have all the classic signs of gastrointestinal involvement but no one will see it until there's irreversible liver or kidney damage happens. The wheel is working great!
Posted 12/19/2013 10:18 PM (GMT 0)
Lupus has to be a strange disease. You just told us that you have symptoms but good tests and I'm the one who has bad blood tests and no symptoms. I'm scared not to get to the doctor too late:( even though I can say I have a step ahead of it. (I know about its coming ...)

Take care :)
Posted 12/31/2013 6:08 AM (GMT 0)
I've been posting here since 2011, and seriously sick since 2008. I've had Lupus sle tests atleast 5 times since 2008 and this is the first time the test came back positive. However, i ordered brochures from the Lupus organization and hindsight is truly 2020 because now that i know more signs and symptoms, i can see where the disease has been around since i was in high school. What the drs say and what the literature says does not match. I now believe that the drs just don't know what they are supposed to be looking for
Posted 12/31/2013 6:15 AM (GMT 0)
I described every single symptom that the brochure mentioned the same way the brochure mentions it and they react as though its the first time they have heard of such things. I thought i was going crazy until i saw the literature. But even with a text book case of Lupus I'm still left to suffer being told that it's just a mild case. What do i have to do cough up a lung
Posted 1/23/2014 12:52 AM (GMT 0)
I saw my primary care Dr today and she agreed that I need to see Rheumatologist and is sending the referral. It felt good to finally have someone actually admit that there could be a reason for everything I have gone through. It helped a ton that my face rash was very prevalent today as well as the all over body rash and mouth and nose blisters. I'm nervous about it all, but it may sound crazy, I am excited that I may finally have an answer and people will stop calling me a hypochondriac and say that I'm a liar when I don't feel good or I hurt. I think it is awful that anyone has to feel so alone when going through something like this. Thank you all sooo much for just being here and helping me to know I'm really not alone.
Posted 1/29/2014 7:21 PM (GMT 0)
Well it looks like scleroderma is my disease. That's the worst of them all, I think. Especially the digestive issues. There's really nothing they can do but treat the symptoms but when it comes to digestive issues the meds don't really help much. I have a swallowing study scheduled but I'm not hopeful.
Posted 1/29/2014 8:10 PM (GMT 0)
Tinabones I am so sorry, My prayers and thoughts are with you
Posted 1/29/2014 8:16 PM (GMT 0)
Tinabones,

Did you finally get a Dr to diagnose it so you can get some treatment? I hope so...
Posted 1/29/2014 9:34 PM (GMT 0)
Sorry to hear about this. I hope it's just a mild case.
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