I met with one of the two doctors on this Island who appear to be at all interested in the illnesses of the less-common public. I knew that whatever answer came out of this visit would be the most definitive answer I was ever likely to receive.
It was a four hour appointment at the Pain Clinic, including them reviewing my extensive chart, taking an elaborate family and personal history, doing physical and cognitive exams, and the like...(it was a LONG day, I'm a little fuzzy on all the details!!).
His answer was that I fall into the spectrum of sensitization disorders - in this case, pronounced Fibromyalgia, Chronic Fatigue syndrome, and Myofascial pain syndrome (among a million other symptoms that show up as a result of everything else I have).
Another MRI is going to be ordered for my spinal cord (to look for signs of MS), and I've been advised to follow an anti-inflammatory diet. I have exercises to implement and a ton of material that I'm supposed to read (although I'm fairly well-read on the subject as this diagnosis has been tossed around for awhile now).
Blood tests are being ordered for Hepatitis, Lyme Disease, and so many hormones and antibodies - just to make sure nothing terribly important has been missed.
I knew this would be the result, and now I guess I can continue trying to fully come to terms with the hand I have been dealt. It would be easier if I was coming up with the money to help pay for some of the terribly expensive treatment options which are still not easily allowing a job!
Going to keep my head high though, as there can always be good stretches of existence :) !!!
xoxo,
Annie
xoxo,
Annie
16 comments:
Annie....I hope this doctor can come up with some answers for you. I wish I would win the lotto so I could help pay your medical bills!
xomo
Hi Annie. I think it's good news that this doctor took so much time with you and realizes that you have some serious medical issues. It's the first time I can remember that you seem to feel as if you were treated with respect in the medical system.
Like Mo, I wish I could win the lottery for you. But doesn't the Canadian government pay for doctors and prescriptions? Perhaps you were referring to alternative treatments that it they don't cover.
I think I know how you feel. When I was first diagnosed with CFS I felt like saying: "The good news is that I have CFS (something definitive). The bad news is that I have CFS!"
glad you got some definitive answers (even if they arent the happiest things to be diagnosed with) - and some respect and consideration from your doctor. i hope all those tests work out to be useful. xoxo
2nd blogger I found today with the same name as me =)))) So sorry you are experiencing so much pain and uncertainty. Glad that you are optimistic though. Optimism works wonders when you are feeling down.
xoxo
~Annie
oh shucks honey. Having most of the aforementioned illnesses I hate to say welcome to the culb. However, at the same time, I know it feels validating to have something definitive to work with. (gentle hugs)
Sounds like mostly a win- I especially like that they're making sure that nothing "slipped through the cracks" in your diagnosis (Lyme disease, for example, can do a real number on a person). And I know what you mean about tests blurring together- keeping my fingers crossed for you! *hugs*
Awww thanks everyone!
And Toni, the Canadian government does pay for the appointments with the doctors, but all my drugs are costing me a fortune. I have a plan and it's still 650 dollars a month!
Annie, a definitive diagnosis is great. Even better that your doctor is taking the time to make sure that nothing else is contributing to your illness. While my illness is significantly milder than yours, I know how the waiting and testings can take a tole on a person. Stay strong.
XO,
Ashley
I'm glad you have a definite diagnosis. It gives you a baseline to work from, and you know which treatments to try and which to stay away from.
Jo on her blog mentioned a book for FM and pain relief. She said she'd love to pass it on to someone else who could use it. If it sounds like something you would like, jump over there and give her a holler. :)
Annie - I'm sorry to hear that they found multiple problem, but, I am glad that you are now getting somewhere definitive. Living in that space of 'not knowing' is taxing in and of it self.
You can do this. I have no doubt. I would think, too, that once you KNOW what you are dealing with, you can make a plan to eliminate some of the symptoms.
I was really impressed that your doctor spent 4 hours with you! Holy cow! I have never heard of a doctor doing that. That, in and of itself, would make me feel better!
You have an amazing spirit! It appears to me that no matter what life throws at you, you just toss it back! :-)
Ok.........got it........it took me a minute to get to the form! I love your blog!! You do have a wonderful spirit! I look forward to following you and I'll put you on my blogsite as well!
Thanks
Rosemary
Annie, I'm so glad to hear that you're getting answers. I know, for us, it meant the world to hear that she had a disease and just like Toni said, you say, "oh crap. I've got this disease!" But that's when you begin to move forward. In my opinion attitude and hope are the two most important factors with hope being at the very top. Hold onto it.
I'll be reading along to see how things progress for you. Take care, Lori
Hi,
I read that you are ripping off nails...make sure they check your thyroid values, all of them. I had a good 10 years of unexplained illness until it was found that I had an under active thyroid and Spondylitis. Before that I was diagnosed with CFS, Fibro and Myofacial PS. I am new to your blog and find that you seem to go through a lot of what I have done in the past decade.
Annie, I think that this appt. validated a lot of things for you.
Is CDP an option for you?
Did you know that you can claim GF Foods on your income tax?
I do claim the GF food on my income tax.
It was definitely an important thing to hear though, that it wasn't all in my head :)
From reading your blog, it sounds like you have Chronic Lyme Disease....check out these links:
http://underourskin.com/
http://ilads.org/
http://www.turnthecorner.org/
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