Wednesday, July 18, 2012

Looking Back...My illness Over the Years!

I've been thinking about blogging on this particular topic for a long time. I thought I'd share the signs of Ehlers Danlos Syndrome that I've had since birth. And, even though I had many, many signs, it took me 49 years to get a proper diagnosis. I'm hoping that by sharing my journey it may help you to see signs that you, or someone you know, have had that may help lead to a diagnosis, or help in your continuing care if you already have a diagnosis.

I was born 2 months early and it seems as though that that was what any medical complaint I had was blamed on. That, and the fact that I was adopted. For some reason, many adopted children at the time when I was born were thought to have health issues. Whether or not that was true or not I don't know. I could see where it might be though as I'm sure many mothers did not receive proper prenatal care.

 I've been told I didn't start walking until I was somewhere around 18 months to 2 years of age. I had hypotonia (low muscle tone) and Cerebral Palsy was brought up at one point as a possibility, although I never received that diagnosis. In school, I could never keep up with the other kids in gym class. And, at one point, I was even put into a Special Education class for gym.I'm not sure how old I was, but sometime during my childhood my shoulders began to slip out of place. At times, I think I purposely dislocated them as a nervous habit and to show off to my friends. I think they were so loose that it was hard for them to stay in place, so I'm sure some of my "nervous habit" was just to try and get them back to where they belonged. I also think my parents and family doctor thought the subluxations and dislocations were all part of a nervous habit and nothing more. 

My eye muscles were very weak and my eyes never worked well together. I got glasses when I was in first grade and, before I was a teenager, bifocals. In the last five or so years I've had trouble with droopy eye lids.

I was sick quite often with both respiratory and gastrointestinal symptoms. My GI symptoms were continuous. Again, I'm not sure of my exact age, but I know it was going on before I was about ten years old. I would throw up quite a bit (several times a week.) I was put into the hospital for both an upper and lower GI series. The tests didn't really show anything and I was told I had a "nervous stomach." My vomiting episodes seemed to calm down, but then the lower GI issues started. I was diagnosed with Irritable Bowel Syndrome sometime during my teen years. My symptoms were so bad that I had to take prescription meds for them. Somewhere in my late teens or early 20's I started with the migraines and dizzy spells. Also, my knees started really bothering me about this time and I was diagnosed with Chondromalacia patellae and knee tracking problems

 I had episodes of anxiety that were accompanied by vertigo, or maybe it was the other way around. Most doctors said it was an anxiety disorder, but one said it had something to do with my vagus nerve (he was probably closer than any of them). With what I know now, I'd have to say it was probably some sort of malfunctioning of my autonomic nervous system. Later, I'd have adrenaline surges that would wake me up from a sound sleep. Thankfully, with the right medication these have stopped. 

I developed migraines in my 20's also. These were pretty severe and weren't well controlled until I started on anti seizure meds that I was given for neuropathic pain (I have read that they also are prescribed off label for migraines).

Finally, in my early 40's I became acutely and chronically ill. Health wise, I have never been as well as I was before this time. What I believe happened was that I had some sort of a virus, which along with the physical and emotional trauma from a car accident, lead to the manifestations of my EDS. All of the seemingly unrelated medical issues were coming together which would eventually lead to a diagnosis. It was a long time before I received that diagnosis, seven years long! I saw dozens of doctors and tried various meds and therapies. I was treated horribly by more than one doctor. More than once I was belittled, humiliated and just made to feel that since they couldn't find it nothing must be wrong. Doctors do this quite often when they are stumped. Rather than admit they don't know what is wrong, they'll just blame it on the patient.

So, there you have it. I'm sure I've left something out, but this is a pretty good picture of what my life with a chronic illness has been like. I don't know 100% if all of these things are  a part of my EDS, but I have to believe at least most of them are. At least all of them are things I've read about in my research of EDS.

Even though I've been sick most of my life, I don't blame anyone for the delay in my diagnosis. Well, maybe I do blame the doctors I saw in the years right before my diagnosis. I think most doctors were looking at each individual symptom, even in my later years. EDS is thought to be a rare disease and not on a doctors radar. I hope that I can help to change that perception. While I don't believe in telling everyone all of my health problems,  I will share if asked why I have this particular brace on, why I'm in the handicapped place, or why I'm in a wheelchair.

I'm too tired to write much more, but in the next few days I want to share the most amazing experience I had at my eye doctors today. I think I may have helped someone there figure out her health issues!!! Stay tuned!



  1. Great post Shari. This really gives everyone an idea how everything progressed for you. I know it is hard to believe, with your symptoms, that it took so long for a diagnosis. So happy you found your perfect doctor...if only he had a different name :) Looking forward to our next phone call! XO

  2. Thanks Cathy! Well, I'll be seeing a new doctor as Dr. T is moving to Chicago! Her name is Dr. Schorry, so that is a bit better. lol I'm off to read your blog now! XOXO