Discussions By Condition: I cannot get a diagnosis.

Seriously?!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: k333ly
  • October 20, 2008
  • 05:33 PM

So after a year of ***l they diagnose me with hypothyroidism and COPD? At 20 years old I SHOULD NOT HAVE COPD! That's insane! X-ray looks fine, but Pulmonary function test shows early stages. Doctor's appt tomorrow. :confused:

Symptoms that get worse and worse and drive me more and more insane and it's just because of those two diseases. Yes, I have a negative ANA, but what the f? (Sorry, for sounding rude!)
-Joint pain (hands, wrist, knees, and ankles) sometimes to the point where I can't walk. Maybe a side effect of the Tegretol, right?
-Seizures, still, even now that I've been off Wellbutrin for quite a while now!
-COPD and asthma!? ....wait, what?
-Photosensitivity. I'm out in the sun for 10 flipping minutes and I get a red spotty rash all over the place.
-When I get out of the shower or excersize everyone freaks because I have a red rash across my face that doesn't go away for hours. Thanks make-up.
-TIRED. TIRED. TIRED. I can't run anymore and I have to stop to make it up the stairs.
-Chest pain all the time
-PAC- heart murmur
-Livedo Reticularis, and they're trying to say Raynaud's too, but I beg to differ. This is all over purple, not just my darn hands and feet.
-Blood pressure last week was 167/88
-CONSTANTLY SICK! cellulitis, meninigitis, sinus infections, ear infections, chest infections, I catch everything and anything that goes around. Just stopped taking antibiotics and refused them, because my immune system is just going to get worse!
-So...easily...bruised. I'm sick of getting asked if I get beat, bleed a ton when I cut myself shaving, but my blood clots up before I can even give a full bag of blood at the donors??
-mental fogginess, loose track of things, could be the thyroid

Currently on (now)
-Synthroid for thyroid.
-Ortho Tri Cyclen (4 years now)
-Tegretol (For seizures, may be causing joint pain???)
-Tramadol for all over pain
-Prescription Prenatal vitamins (Natalcare) after a blood test (huh? I'm not pregnant, but I guess I'm that vitamin deficient?)
-Prednisone, 10 mg x2 day, only thing that helps me breathe!!! it even took away these weird red irregular bumps on my elbows but gave me new ones on my legs....tongue kinda swelling too...
-Advair, couldn't breathe still with it
-Albuterol- throat closing, and "holy crap I can't breathe! attacks"
-Valium and Ativan- Just as needed, not too happy right now. :o

So now what?! I know I need to quit smoking and drinking - getting there, slow progress. But how could anybody get COPD at 20?!! It doesn't run in my family, no lung issues do!!!

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7 Replies:

  • Bruising may be a result of inhaled steroids (advair): http://www.chestjournal.org/cgi/content/abstract/126/4/1123 Have you been checked for lupus? Ask about celiac disease too. A lot of problems arise from being intolerant to eatng wheat and wheat products. http://www.chestjournal.org/cgi/content/abstract/80/6/715 http://www.ncbi.nlm.nih.gov/pubmed/17235730
    aquila 1263 Replies
    • October 20, 2008
    • 07:07 PM
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  • Haven't been checked for celiac disease. Had an ANA test done not too long ago (I've had breathing problems for some months now...) "Came out negative, so there for, no lupus."It's getting to the point where I am having a hard time completing full sentences without stopping to have to breathe. It's pathetic. That was what made me go to the doctor in the first place, but it's been getting so much worse over the past few months. It seems like I've been getting asthma attacks and my albuterol isn't even freakin' working- which makes me panic and makes it worse. So I have to sit upright, freaking out, for an hour, waiting for my inhalers and ativan/valium to kick in to calm down. I just don't understand how I got it at such an early age. :(
    k333ly 59 Replies
    • October 20, 2008
    • 07:53 PM
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  • Oh, and I've had the livedo and easy bruising since I can remember. It's been over a decade since I even first acknowledged it... It just gets worse over time. I have a picture of my knees on a website located here, if you want to see how bad it can get... http://www.lookgreat-loseweight-savemoney.com/livedo-reticularis.htmlStrange thing is, I even get it on my hands now (quite recently) looks the same, except just RED web like pattern all over. Sometimes it hurts too when it happens, but it's usually just there all the time. Maybe just a side effect of meds or the fact my blood pressure is so high. Palmar Livedo?
    k333ly 59 Replies
    • October 20, 2008
    • 08:06 PM
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  • Okay, had doctor's appt today. Said I have had asthma probably since childhood and was never caught. Also said that I was genetically predispositioned for COPD, and 7 years of smoking caused it so early. It's only in the early stages, even though I can't even breathe through whole sentences. Ashtmatic COPD.... ughhhkeeping me on prednisone for a while since it's the only thing that helps me breathe... Anyone have any side effects with using prednisone for more than 2 months?
    k333ly 59 Replies
    • October 21, 2008
    • 06:39 PM
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  • I knew I was going to get the inevitable lyme talk. :o
    k333ly 59 Replies
    • October 22, 2008
    • 01:27 PM
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  • So if I were to get a "reliable" test done in the Kansas City area (Kansas or Missouri is fine) where would you suggest I go? Since my current doctor probably wouldn't have the right idea either. What is the best diagnostic test?
    k333ly 59 Replies
    • October 22, 2008
    • 03:44 PM
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  • *Please* ask your doctor abut celiac! Show him/her the links I sent you from the journal called Chest, which is a highly respected medical journal... We had a physician program about celiac in the hospital where I work, and it is missed by doctors in a startling number of cases. I see a lot of them on this forum, sadly. If it is celiac, you may be able to stop the progression of the disease. If you are wheat intolerant and continue to eat gluten, your health may worsen. Eliminating gluten is no fun, bt it's not impossible. The test to discover celiac is simple. Good luck.
    aquila 1263 Replies
    • October 22, 2008
    • 04:17 PM
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