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Dorito

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 #1 
I was recently told by my rheumy that unless I get significantly worse, or manage to inflict a flare-up for my next round of tests, I will likely never be diagnosed. I am turning 18 in a week, but February 10th marked seven years of inconclusive tests and half-baked diagnoses before having them revoked when some symptoms didn't fit that mold. Seven years of watching my mom break down crying in front of the next specialist to tell her those ugly words; "I don't know what it is..." I can't accept not being diagnosed. They can diagnose the little things, why not the whole? I have an autoimmune disorder, which one, I will never know. I've been told it is in my head or that I'm just unlucky enough to have multiple things at the same time. No one has connected all my symptoms. I've had chicken pox despite being vaccinated at a young age. I got them at 15. At 16 I had shingles. That same year, after visiting multiple specialists and many brain scans, I was diagnosed with a strain of mono. During each of these I had other symptoms as well, which seemed to be activated by my immune system attempting to respond to the attack on my body. Every flu and cold resulted in the same reaction as well... A red rash would appear on my skin near a joint or joints that would soon begin showing arthritic symptoms, but X-ray's showed no deterioration in the joints. I've had hives during flares as well, covering me from head-to-toe with no apparent cause. My skin becomes mottled at times, or purple in the fingers and toes with sudden coldness and pain. My nails are weak at times, and normal at others. I am extremely sensitive to sun light and will get sun stroke like symptoms from united of sun exposure. Every summer splotches of skin darken slightly in pigment and become painful, hard, and dry. I was told I am ANA positive, and have constant elevated inflammation markers, heightened further when in flare. I regularly get ulcers in my mouth, lose my hair, and experience severe fatigue. I have nerve pain in my hands and feet. I will have memory problems that fit perfectly with what I've read of lupus fog. Sudden uncontrollable body twitch, and eye twitch. I have elevated white blood cell levels, and on multiple occasions they have been found to be active near the points of pain or in my digestive tract. I have a severe iron deficiency. The rheumy believes all of this is separate, or perhaps in my head. The first rheumy I saw suggested I made it up for attention and was being molested at home. That was seven years ago and now it seems everyone has given up on diagnosing me. All I have is my family doctor saying she would diagnose it as lupus, but only a specialist can make that official.
Robinj

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 #2 
Hi Doirto
This is the criteria for dx-ing Lupus:

A person with 4 of these 11 conditions may be classified as having lupus. These conditions may be present all at once, or they may appear in succession over a period of time.1


Also, does your Rheumatologist have any lupus patients?

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Dolphin

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 #3 
Hi, Dorito your story is similar to mine. I'm a bit older than you now.  +ANA at 19. It was hard for me to navigate the healthcare system at that age and still is now. As rheum's dismissed me, PCP had been treating my symptoms. After yrs another specialists recommended that due to my young age and complex problems that I go to a major university such as Mayo, Hopkins, Clevland and get this all sorted out.  Taking the advice worked out well for me and I wish I had done it sooner. Prior to diagnosis, I was referred to see a psychiatrist MD.  At first, I was offended and thought I was going to be dx'd as a bonified hypochondriac. Instead, it was great and they helped give me advise about dealing with the rheum's. Also, then you can tell rheums it is not psychiatric. What worked for me was taking pics of all symptoms such as skin and joint changes and pics of hair on items.  I also had pics of me outside as photosenstivity was a trigger for me.  I also made a 1 pg typed bulleted list of all my symptoms that included a timeline with triggers.  I know it seems like their is no hope, but I made it out of the rheumatology twilight zone and eventually got dx'd.  Whether Lupus or not, you just can't give up.   FYI, if it helps formating my list like this worked for me. 
                                                                                              
                                                                                                                                           Facial Rash- Feb 2013
                                                                                                                                           triggers- beach.last 2hrs.
                                                                                                                                          Raynauds- Jan 2013 (dx'd by Dr. X). 
                                                                                                                                          -trigger's- cold, resolves w/ heat. 
                                                                                                                                           Labs:
                                                                                                                                           low wbc (4x)- 2016
taffylinden

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 #4 
Hi, Dorito. You are in a VERY tough spot, so I complete understand why you're beyond frustrated. It sounds like you need a new rheumatologist. Some are better than others, and as Robin said, some don't deal with lupus patients and so may not diagnose accurately. And some docs hate cases without easy answers and will dismiss you with, "Go see a shrink." I like Dolphin's suggestion of going to a major university to get it straightened out and of taking photos. I'd add a list of symptoms and the dates you had them. It'll be in your chart, but docs don't always read charts closely. Tell the doc you're determined to get a diagnosis, so you've included all symptoms, even though some may be irrelevant. 

Having been diagnosed with Undifferentiated Connective Tissue Disorder, which translates to "I dunno--something autoimmune" for years, I get why you hate the vagueness. The thing people don't get is that it's scary having no diagnosis. Will this progress? Docs shrug. Why is it happening? Docs shrug. For years, docs couldn't put all the pieces together. People thought of me as having many health issues, but I felt they were related by "Factor X," as I called it. I finally decided if I were the only person on earth with this condition, I'd call it after myself, so it was "Taffy Syndrome". :) You can name yours after yourself or call it "Auto-Immune Disorder" if you need a term.

But even a lupus diagnosis wouldn't answer many questions. The disease varies so much from one individual to the next that there's no predicting its course. You've been given a hard row to hoe, but you're smart, you're persistent, and you have a great support person in your mom. You can do this.




upstater

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 #5 
I'm sorry....that's a frustrating situation.

You have gotten much excellent advice. I have also been labeled "undifferentiated connective tissue disease/UCTD". While that's not specific and can't forecast my future....neither could lupus or any of the other "named" connective tissue diseases. What mattered to me is that my rheumatologist said to me "you definitely have a rheumatological/connective tissue disease". And she put me on Plaquenil, which is a medication that can help with most of the connective tissue diseases....even if yours is unable to be currently named....or that name is just UCTD. She is keeping an eye on me. And I believe I am in good hands, regardless what directions things head - or hopefully don't head.

I do go to a major center focused on research. I think it makes a difference. I went to 2 local rheumatologists first who were not a good fit.

I did also get a biopsy of my rash (with turned out to be discoid lupus). There was an agreement with my dermatologist, that if it flared, to call right away and he'd squeeze me in to grab the biopsy. That can be really helpful.
Dorito

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 #6 
Thank you all for the support and tips.

Robin, I assume my rheumy has seen patients with lupus. He is a pediatric MD, but supposedly "the guy" in Atlantic Canada as far as autoimmune disorders go and has been following me for six of the seven years. Which is why I struggle so much with the idea that even he can't diagnose me. My mom says that is the only reason she isn't 100% convinced I have lupus since "the guy" can't say definitively.. I've seen the eleven symptoms list before and have most, if not all at one point or another.

Dolphin, I never even thought of going to a major university! Thank you for the tips. My mom suggested keeping track of everything the same way you did. I also requested my medical records from my doctor since I have a hard time remembering everything so I can reference my past when symptoms appear!

One major problem with me getting diagnosed, I feel, is that I do not have much options in terms of second opinions. In my area, there is one dermatologist. We wanted to get a few skin conditions biopsied but never got in to see him in time. There is also only two rheums and mine is supposed to be the expert...
Robinj

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 #7 
Well, best of luck!
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Dolphin

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 #8 
Dorito, it is good ur mom is on board. I started college and made the mistake of going to appts alone. My mom was same as ur's. She would sometimes get frustrated and say that well if the rheums are saying its not lupus, then its not.  One time she  told me I had munchausens (funny in hind-sight but made me mad at the time).  The turning pt was when mom went with me to another specialist and when I asked them if the rheumatolgists are saying its not connective tissue if I should listen and the specialist said "no" and to go to major rheum.  How long can u see the peds rheum ? The closest teaching hospital to me is a peds one and one of my dr's tried to refer me to her daughters rheum but they said they won't see anyone over 18. I think u have a good reason to see about a 2nd opinoin without offending ur current rheum, if you want to start getting used to an adult one.  Also, with the major rheum that I went to  they said they are consult only but they wrote a report and I show it to local rheums that details SLE dx and treatment.  So far local rheum's haven't questioned it as I think it takes a pretty big ego to go against clevland,hopkins or mayo.
taffylinden

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 #9 
I'd still make an appointment to see the "expert" dermatologist. If you have photos, so much the better. If you can't be biopsied right then, he can make arrangements now for you to get biopsied when the rash shows up again, either by him or someone else. Dermatologists run into this situation all the time. Or if you have to go out of the area, that might be worth it, too. I used to travel over 100 miles each way to see my rheumatologist and dermatologist.

 
Dolphin

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 #10 
I agree with Taffy.  The major rheum did say that derm biopsy would have been helpfull to me. I would have everything documented that u can and the labs with u.  I put my pics on my tablet so they were easier to see for rheum than on a phone. I was able to get dx'd finally with no extra labs needed at 1 visit.  I was desperate so I took the SLE dx criteria with me and emphasized that I know I'm not a  dr and that they know more than me and I understand there are other disorders but I don't understand why I'm being told I need lung involvement. However, I would try to avoid that if possible as rheum's don't like self diagnoser's and try to stick with the pics and documents of symptoms, labs and not mention the name of a specific disorder.  If I had a dx of UCTD or a rheum willing to help me, I wouldn't have been aggressive as I just wanted help not an SLE dx.  However, I was crabby having gotten up at 3 am and there was a scheduling mix up and I had to wait 5 hrs past appt and they let me sit there for 2 hrs without telling me there was a problem so I was not in the mood to hear about all the "really healthy people with positive ANA's above 160."
Dorito

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 #11 
I was told by the pediatric rheumy that I could continue to be followed by him until I graduated high school (this was after I failed to pass grade 10 the first time). I dropped out of school though and he has continued to follow me, so I am unsure as to how long I will be able to continue going to the children's hospital. A friend of mine with a chronic illness will be followed by this specific pediatric hospital her entire life since this is a small province and most specialists are at the children's hospital here.

My mom has started taking pictures of all of my noticeable symptoms today and says she's very happy I joined this forum.

We had problems with the experts not liking self-diagnoses as well, my mom came in with information on our family history of lupus and pointed out my symptoms but much of it was dismissed as being unlucky and unconnected. I regularly get strange lesions on my legs and arms, but my rheumy says they are bug bites I picked at in my sleep. So it's kind of hurtful to have everything dismissed. I plan on keeping detailed daily health information and doing more research on auto-immune illnesses. For now my mom has decided to treat me as if I have lupus and use all non-medical (I was prescribed daily pain killers but I think that just masks the pain because I'm constantly on them, does anyone think it's a bad idea to take them? I'm not crazy about masking symptoms when I'm trying to be diagnosed but the pain is so bad...) treatments possible to avoid flare-ups.
upstater

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 #12 
Dorito....this article might be helpful!
https://www.hss.edu/conditions_dealing-with-uncertainty-lupus-diagnosis.asp?mc_cid=92332892cf&mc_eid=c1dd91651e#.U8jsabHbaaU
taffylinden

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 #13 
Dorito, it depends on what kind of painkillers they are. Vicodin? Oxycodone? Those are more addictive. I'm pretty leery of painkillers because I don't like the way they make me feel, plus I don't want to get addicted. I DO think you should avoid painkillers before dr.'s appointments. That's one time when you don't want pain masked.

I think if you went to a dermatologist about the lesions, you could get a better answer as to what's causing them.

One thing to keep in mind is that having lupus or UCTD doesn't mean you can't have anything else, TOO. There are people who have SLE, for instance, but who also have diabetes or MS. So it's possible some of your symptoms are NOT lupus-related and some are. It's also possible you have a combination of other auto-immune disorders. There's a list of over 80 of them. (Since I'm not a doc, take all this accordingly,) Or it could be a combination of other non-auto-immune disorders. The point is, you're a complex case, and it may take time and the right docs to connect the dots.

What do adults in your province do for medical care if most of the good docs are at the Children's Hospital? Just curious.

What non-medical measures is your mom using on you?
Dorito

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 #14 
As far as what adults do, I know that for severe ailments, they commonly travel out of province unless it is an on-going illness from childhood, then the children's hospital may follow them to adult years. But when I say most good doctors, I mean experts on rather rare or 'tricky' illnesses. We have a very good general health care system!

I take naproxen daily. My rheumy seems to be pretty happy with leaving me like that for now.

My mother has been using things like buying me a parasol to limit my sun exposure among other things to avoid my reaction to UV rays. She's also been looking in to UV light therapy as we've noticed I seem to build up some tolerance to the sun over time, but it starts all over next spring-summer.
I've also been drinking chaga tea, which is a type of fungus that has been proven to assist in strengthening the immune system and relieving pain. It's gross though. Like... Fill that sucker up with sweets gross.
Aside from that it's mostly precautionary things such as enforcing no second hand smoke near me and anyone who does smoke has to shower. She's done a lot of research on what to do and what to avoid with lupus and it's helped make life a lot easier for me so far.
Robinj

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 #15 
"She's also been looking in to UV light therapy as we've noticed I seem to build up some tolerance to the sun over time, but it starts all over next spring-summer. "


If you do have lupus, sun and/or traditional UV therapy is NOT a good idea. It would increase disease activity.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
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