Things change today, one way or another. I’m starting this post before my doctor appointment, I’ll post again afterward so I can blog about how it went.
I’m not as gloomy about the thought of upping my medication as I have been. I guess the pain is just too much now that it makes me feel option-less. Just getting through the day lately has been an enormous challenge and it’s exhausting. I wake up in the morning after another largely sleepless night and feel utterly melancholy at the thought of doing it all over again.
I’ve been spending most of my days this week sitting, hunched over forwards, because it’s the only way I can lessen the pain in my back. Of course it’s uncomfortable in a dozen other places but it’s the best I can do right now. I can’t stand very long at all before the pain is nearing unmanageable.
Thanks again for all of your support! It really does mean the world to me. I’m hoping things turn around soon, I’m tired of the negative posts. I’d like to have something happy or uplifting to say! Hopefully soon, yeah? :)
Note: I know I just posted this song (with it’s official video) but afterwards I found this amazing animated version by an incredible artist named Ryan Woodward. I love it!!
Well, I finally got my procrastinating bum in gear and dealt with an enormous amount of things that needed to be done when I seen my doctor. And, as I was dreading, I walked away with an insane amount of tests and appointments.
To start with I need an ultrasound on my kidneys, and also another one specifically on my gallbladder to check on my polyps. I need to go see a urologist out of town for bladder retention problems and find out whether or not there could be something causing it other than my spine. I also need to go back to Vancouver – yet again – to see the orthopedist that we had to cancel on earlier this year when my rib subluxated (we didn’t think I’d be able to handle the appointment because I could hardly move). While we’re in Vancouver we’ll also be seeing a neurologist about diagnosing (or ruling out) several different brain related complications that can arise in tissue disorders like cervical cranial instability and chiari-malformation.
We also need to talk to the neurologist about getting an upright MRI of my spine to check for dural ectasia and tethered cord (my gp isn’t allowed to refer patients for MRI scans). There are only two upright MRIs in Canada, one is in a private clinic in Kamloops that we can’t afford and the other one is in Vancouver but used only for research purposes. We’re hoping that since my disorder is rare that maybe if we talk to the right people I could qualify as research. While we’re in Vancouver we’re going to go see my ophthalmologist to check on my eyes.
My doctor and I talked a bit about my hip problem and how in her opinion since we already know that it’s subluxating and that’s the cause of the pain that she’d rather not order an x-ray on it. I’ve already had and will need so many imaging tests that she figures it’s best not to expose me to more radiation when it can be avoided. Since there’s nothing we can do for my hip right now but treat the pain I agree with her. I’m already leaps and bounds over the recommended doses of radiation so that does seem like a reasonable decision.
I think – and hope – that I remembered all of it. My stress levels always go up when I know I’m going to be seeing so many new doctors and getting poked at so much. That’s part of what sends me into my spells of avoiding my doctor altogether; denial’s much easier that way lol. I am grateful though, that I’m being looked after medically now more than in the past. It’s nice to have a doctor that willingly recognizes the ridiculous amount of avenues that need to be checked over with a disorder like mine.
On another good note, my doctor’s agreed to work and talk with the ILC Foundation when it comes to my care, as well as pass the contacts for the EDS aware doctors they’ve provided us with to the necessary specialists that I see. Thanks a million Sandy!!
Yesterday was the appointment with the connective tissue specialist that i’d been on the waiting list for 6 months for. We were going to talk about my worsening symptoms (joints going out, increased pain etc.) and get a new perspective because as we were told; he specializes in connective tissue.
After the hour and a half long drive to get there we were told they were running about 20 minutes behind (slight under-exaggeration). Another hour and some later we were finally called in. The waiting isn’t so bad, I had figured any help from this doc would be worth waiting for.
Once he walked in the room I kid you not he spent the first 10 minutes of the appointment looking up Marfan Syndrome on the internet -he didn’t know what it was! The next 10 minutes he spent explaining to me what it was! Telling me about how it can involve the heart yes, I know and the lungs yes, I know and the skin yes, I know. He then used the rest of his time looking over my features; the long fingers, the height, the works, while going through my tissue related symptoms and then trying to fit them specifically to one of the tissue disorders. “Well maybe you have Loeys-Dietz” No doctor, Loeys-Dietz doesn’t effect the eyes and like I said earlier; I’ve had 7 eye surgeries.
This is how the entire appointment went. He was trying to diagnose me with a tissue disorder -which we’ve already long established with the aid of doctors who’s jobs it actually is to diagnose them, not by those who don’t even know what they really are. He spent his time educating me on the basic and most simplest aspects of Marfan Syndrome -things I could recite in my sleep- even after we’d told him I’d been to the NMF conference and have always been educated about the disorders. Then when I asked for the MRI to check for dural ectasia (he didn’t know what DE was either) he began looking that up and telling me all about it too. He said MRI was the best means of diagnosing it, which got me thinking why else would I be asking you for an MRI referral for that very reason? I had to bite my tongue to keep from either laughing at him out loud or saying some of the not so nice things that were floating around in my head.
And while we were getting up to leave he added “you definitely have Marfan Syndrome”. Thank you doc for that unbelievable insight! I’ve finally been diagnosed! (Note the sarcasm).
One good thing did come of the appointment; he ordered the MRI of my spine. Then told us to make an appointment to see him again when the results came in, which if you haven’t already assumed; I won’t be doing. I think that maybe his area of expertise (if connective tissue specialist is even among them?) is more along the lines of lupus-like connective tissue problems.
Anyways, the highlights of my day trip to Prince George include finding the comfiest sweater I’ve ever worn and will now never take off from here on out and my grandma driving the wrong way up a one way street. Priceless.
Today I had a doctor’s appointment to discuss some of the recommendations I received at the NMF conference as well as to talk about some new things that are beginning to crop up. My doc knows me well enough now to realize that it’s sometimes necessary to book two appointment slots just for me. This way we can talk about everything that we need to talk about without making other patients wait. She is always really good at wanting to know how everything is going and chat instead of rushing me out the door like some doctors do.
The most concerning thing that I wanted to go over with her is this tremor that I’ve gotten within the last month or so. It has been getting progressively more prominent and disruptive as time goes on. Sometimes it’s also less of a tremor and more of a difficulty in getting my hands or legs to do what I want them to do. For example, sometimes when I’m driving I have to put noticeably more effort into getting my leg to move from the gas to the breaks then I usually do. Or, sometimes I notice it’s way harder than it normally is to make small movements with my hands/fingers like trying to open a package or to type on the keyboard. When drawing it’s more obvious that I can’t do a smooth straight line anymore without lifting up my hands every few seconds. Hand tremors run in my family on my dad’s side. My dad and his mom both have them as well as some other members of his family. My brother has also recently begun to experience the same thing. Mine differs only in the speed that it’s progressed and the fact that it also effects my legs and feet. My doctor did some quick neurological tests (finger to the nose, different types of hand movements) which didn’t indicate anything too worrisome. She thinks that it’s an essential tremor and the fact that it runs in the family makes it a familial essential tremor. She said to keep an eye on it and that if it continues to become more severe or too disruptive that treatment to minimize the symptoms is an option. She also said that if it’s noticeably bad at the time not to drive. Which isn’t too helpful because it mostly comes on while I’m in the middle of driving. So, that’s that for now. It’s a bummer but not life threatening which is good news. It’ll make some of my hobbies more of a challenge but I’ll work my way around that.
An MRI of my spine has been booked to check on my scoliosis and screen for dural ectasia. I’ve been contemplating asking for an MRI to check for dural ectasia for a few years now because of the link between the condition and headaches.
Tomorrow I go see my optometrist about the drops to restrict my pupil and see if that helps my double vision. I don’t know why but for some reason I think that it’s been suggested before but wasn’t an option. So, I’m not getting my hopes up, I don’t want to be disappointed if I can’t try them.
In august I have a pelvic and abdominal ultrasound. One is to check out a polyp that was found on my gallbladder and to get a better look at my common bile duct because it was a bit dilated. A few other ducts have also been noted to be dilated over the years but personally I’d assume that it can be attributed to my tissue disorder in the same way that a dilated aorta is. They also want to have a look at my abdomen because of the nausea and cramps I’ve been getting daily. Also, in august I have an appointment with a connective tissue specialist.
Now you’re all good and updated. Until tomorrow’s eye appointment anyways. Maybe tomorrow I’ll have good news.
I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are in need of medical advice see your doctor.