Thursday, January 05, 2012
In my last blog I said the newest results from Temple was possibly an edge piece to the puzzle that is me. Today was definitely an edge piece.
I saw a rheumatologist for the first time. Turns out I didn't have to be as defensive as I've had to be all my life with doctors - based on the records I sent him, the new patient questionnaire, and the joint hypermobility I showed him he seemed to agree that there's a decent possibility I have what I think I might have, even if possibly not exactly what I thought.
Ehlers-Danlos syndrome is a condition that mostly affects the connective tissues in the joints, causing them to be too loose. There are 6 types, each with their own symptoms and complications. A few of these types are what allow contortionists to bend the way they do. Others are more dangerous because they affect the internal organs also. There is a *possibility* that I could have a dangerous type, but there's still a chance that I have a combination of the types - and that they can correct what's wrong.
The doctor gave me a phone number of a person to contact who is apparently 'in the know' for studies on Ehlers-Danlos and for who can do the genetic testing to actually diagnose it. In the meantime, I need to get an echocardiogram to check for heart valve problems (a dangerous symptom) and get my eyes checked for specific dangerous problems.
Remember, there is a chance that this is not what I have, but there's a decent possibility that this might be the answer. There's a chance it's not as bad as it seems and the doctors can help me, but there's a chance they can't. This is still up in the air, but by having this doctor say this is a real possibility, it makes me think I might finally be getting closer to answers.
Tuesday, January 03, 2012
I got my biopsy results back from Temple today. It's been almost a month and I'm still waiting for 1 more set of results to come back.
The biopsies were taken during the endoscopy and took samples from my esophagus, stomach, and the first part of my small intestine. Without overwhelming anyone with the full medical terminology, basically there are signs of major inflammation and/or infection from one end to the other, but most of it are inactive signs (not currently inflamed or infected). This could mean many things, but it doesn't appear to be pointing to any cause in particular.
So this isn't good news, but it isn't exactly bad either. It's just another piece to the puzzle. Let's hope it's an edge piece though! hehe
Thursday is my first appointment with a rheumatologist. Let's hope they're ready for the challenge that is me!
Sunday, January 01, 2012
Wishes, wants, and resolutions - all things I suck at. I hate holidays because they almost always turn out horribly crappy. It's easier for me to treat all days as 'normal' days and avoid holiday hype. Plus lately my health is so horrible it's hard for me to consider the positive aspects of holidays.
Last night I wanted to go to bed about 8-9 pm. I ended up on a phone call from 7-9, so instead I crawled into bed about 10. I didn't want to stay up with my parents and I have had horrible dreams lately. My mother has been drinking again and it has made her lose control over her emotions again, so she kept me up Friday night by yelling at me and my father about booking the plane tickets for my follow up appointment in Philly at the end of the month. I've told her I can't handle the stress she places on me when she drinks and when she flips out. Of course, my health doesn't mean anything to her when she gets the need to drink. So Friday night I was having dreams of me in a horror movie and last night I had an even crappier dream.
I typed out a long blog about the dream and the meaning it has for me and all that, but it's too heady and strange for new years day. Let's just say the dream added to all the fears I have right now due to my failing health. So instead, I'm going to stop here and say I can only hope that things will start getting better and stop getting worse. Either way, I can't just give up, so I have to keep trying, pushing, and working to make it better.
Thursday, December 22, 2011
Saw a liver specialist today. He walked in and said I'm his easiest patient for the day. He looked at the records of the CT and MRI scans of my liver from April and last month and said there wasn't a change, the lesion (haemangioma - a large blood vessel) isn't really anything to worry about, and that was pretty much it. I asked a few questions about the possibility of it causing problems and/or getting worse but he said it's really not a big deal - it's basically like a birthmark and may have always been there.
On the way to the appointment I set up another appointment with the rheumatologist that my primary doctor referred me to. After explaining my case, that the symptoms and condition are very serious, and that I'll also have to have genetic and/or muscle and skin biopsies to confirm or reject the diagnosis we're working towards, I was able to convince her to get me in sooner than the end of February. After adding in that I'll fax important records ahead of time, she was able to get me in January 5th! If anyone cancels next week, she'll call and see if I can come in sooner. Apparently when you're honest about how bad of shape you're in and offer to save the doctor as much time as possible, people will step up. Now let's hope the doctors are receptive and willing to give me a chance to make my case.
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