So I may have a mystery illness, but that doesn't mean I haven't been collecting diagnoses left and right. 

Some of them date back to early childhood (I'm told my first severe asthma attack requiring hospitalization was when I was 8 months old). Most, of course, were acquired in the past couple years.

But I recently tried to collect all my diagnoses on a list, and as long as I've done that, I figured I might as well share it with y'all. (Hey, I lived in West Virginia for 4.5 years, so even though I'm not a native southerner, I feel like I earned the right to say y'all. :-)

  • Severe depression
  • Intense chronic fatigue
  • Chronic pain in multiple joints
  • Idiopathic hypersomnia
  • Tinnitus and moderate hearing loss
  • Inappropriate sinus tachycardia w/premature ventricular contractions (PVCs), both worsened with activity
  • Dysautonomia (primarily a "mild" form of POTS)
  • MGUS (monoclonal gammopathy of undetermined significance)
  • Degenerative disk disease in both low back and neck w/stenosis & nerve compression
  • 1995 shoulder injury that required two surgeries (3/97 & 1/99) involving a/c joint removal, bone spur removal and repair of a labrum tear. WA L&I declared me 15 percent permanently partially disabled. 
  • Undifferentiated connective tissue autoimmune disease (UCTD) 
  • Migraines (first diagnosed in 1978) and chronic daily headaches for at least the past six months (sometimes migraines, sometimes not)
  • Costochondritis, chronic
  • Parvovirus, possibly chronic (but that's a very controversial diagnosis, along the lines of chronic Lyme disease, which not all doctors accept as "real.")
  • Tethered spinal cord
  • Hypothyroidism
  • Asthma & allergies
  • Sinusitis, chronic
  • Vitamin D deficiency
  • Iron deficiency
  • Chronic stomach pain/sensitivity from series of peptic ulcers (2000-04) caused by use of NSAIDs that left massive scar tissue in stomach
  • IgA deficiency


Anonymous said...

I don't know how sick you still are or how many of your symptoms are related or even what part of the country you are in.

I was very sick for over a year and then I found an amazing Dr. in Orlando, FL... Scott Van Lue.
You can check out his website at www.everythingwell.com.

He practices functional medicine, which is essentially the pursuit of health rather than treating a bunch of symptoms. Turns out almost all of my symptoms were related to my thyroid problem that was being improperly treated. I didn't have a serious injury, though.

Best of luck to you!!!

dravensfire said...

You and I have several things in common, which is why I ask:

Have you ever been evaluated for Ehlers-Danlos Syndrome?

My boys and I were diagnosed w/ the classic type of EDS 4 yrs ago. I have joint pain, ranging from mild to severe, in most joints, nerve damage and pain in my legs, dysautonomia similar to POTS, IBS, and the beginnings to DJD in my spine. My EDS isn't an extreme case.

With your combo of joint pain, dysautonomia, spinal DJD, if you haven't been evaluated by a geneticist for EDS, I encourage you to visit www.ednf.org for more info on EDS.

Hang in there!

Aviva said...

@dravensfire: I appreciate your suggestion. The URL you gave me is awesome, but it looks like although I have many of the minor criteria for EDS, I don't seem to have any of the major ones. But I will bring it up to my PCP, and I appreciate your suggestion to look in this direction!

Jenny said...

I find your illness very interesting. I struggle with a similar illness. Althou, I was been dealing with it since the age 16(I'm 30 now). I have much of your same symptoms. However, I have a disorder called Hyper IGM, with a secondary disorder now of fibrosis in my lungs. I am curious, to know, if you are treated for your low IgA? It actually took me 15 years to get a correct diagnosis. At first I was diagnosed with CVID. However, we recently found it was misdiagnosed.

Aviva said...

Hi Jenny,

I'm sorry to hear about your health issues, and that it took SO long to get a proper diagnosis! The fibrosis sounds very scary.

I'm not treated at all for the IgA deficiency. Apparently there's nothing they can do for it, and it's not considered particularly serious even if it does probably contribute to my high frequency of sinus infections, pneumonia and other respiratory issues. :-(

I know for some immunodeficiencies, they get treated with IVIG. What are your doctors saying?

K said...

Hi Aviva-
I just found your blog since you are following mine. I have been slacking in blogger world, but finally wrote a new post today and saw I had many referrals from your site. So just wanted to say thanks for sharing and helping to connect all of us who have chronic illnesses! You are like me it seems, a mystery illness so far. I think they have a very hard time understanding chronic fatigue and pain. It is so frustrating! Anyway, keep in touch! Sorry for long comment, it was the only way I could see to message you!

Unknown said...

not to sure how to spell it but its sounds like pollmylgia rumatica is what u have my dear what is your sed rate?srd2732YAHOO.COM

Tara said...

I just discovered your blog & I'm now following it. Thank you for being another source of inspiration & education online. Everyone with chronic illnesses needs to stick together & create an online community.

Have you ever been tested for Sjogren's Syndrome? Sounds like a lot could be caused by that.

Visit my blog too please - would love to have you follow as I'm still trying to spread the word & create awareness.


Gentle hugs ~ Tara

Anonymous said...

I had to double check to make sure I wasn't reading my own list of diagnoses. My favorite line in this post "So I may have a mystery illness, but that doesn't mean I haven't been collecting diagnoses left and right." I've been deteriorating for a while but no one, including me, took it serious until about 2 years ago. Since the the negotiating healthcare and endless diagnoses... well let's say... it has made life interesting.

JK47 said...

Very similar to my history as well. Have you been tested for lyme...? That's what I have, so of course I see it everywhere I look. But it IS the great mimicker. Blessings to you for sharing your story.

Anonymous said...

Hello, I'm so sorry to hear of your health troubles. I am 32 years old and have been chronically, oft critically ill since I was 14.

Reading over your symptoms, and relating them to my own experiences in diagnosis and profound illness, may I offer a suggestion?

I hate it when people suggest things to me about my health, but I feel compelled to suggest that you be investigated for Ehlers-Danlos Syndrome.

I have many, if not almost all, of your symptoms. I have Ulcerative Colitis (diagnosed at 14), Ehlers-Danlos (diagnosed 2014), and POTS (diagnosed 2014).

Perhaps this is of some help for you. As well, you should know that some EDS can't be totally confirmed by genetic testing because we don't know everything yet about our genes. Meaning, it is possible to have Ehlers-Danlos and not have a known genetic marker for the syndrome.

Offering you much peace.