After 7 long months of trying to figure out what has been wrong with me and seeing many specialists of various types, I was finally diagnosed last week with fibromyalgia by my neurologist and diagnosed on Tuesday with Arnold Chiari by my neurosurgeon.
About 3 years ago, I went to my PCP for the nasty exertional headaches when I cough or laugh and had an MRI that was read as completely negative. After having my latest MRI done 3 weeks ago, it turns out the original radiologist missed the chiari because the last radiologist mentioned the tonsils and overcrowding were "not significantly changed from the previous MRI." I am thinking had the neurologist and radiologist at that time both caught that, I could have alleviated all the crap I have been through physically in the last year. It's been a hell of a year and I am pleased to finally have diagnoses. My surgery is scheduled for Nov 30.
I am just now starting to read through all these threads (I just found this site last night). Anyway, I just wanted to say hi and am thankful I found this forum.
Welcome Leslie, sorry you have to be here tho' dont ya just wanna kick some of those people who missed the now what seems so obvious..lol... Hmm I doubt you ever have fibro tho, Where are you having your surgery done at?
I am having my surgery in Elmira, NY at Arnot Ogden Hospital. The thing I am very thankful for is that the hospital I work with is a part of that hospital now, so almost everything I have done in either facility is a write off after my insurance covers - I am so thankful right now that I have this perk.
And yes - I am very angry right now at a LOT of doctors. I feel my PCP dropped the ball with me and just figured I was becoming a hypochondriac. He wasn't the one who ordered the MRI for me OR referred me to this neuro. I had to go to Arnot's ER in the serious pain I was in at that time and begged THEM to schedule me for both. That was just over 3 weeks ago, so all of this has basically come about really fast after spending so much time waiting and being put off my my PCP. Don't get me wrong - I LOVE my PCP and have no desire to change. I am pretty sure this is a new thing for him and he probably hasn't ever come across it before.
Hi, Leslie. I am also new to this group. I just signed up 2 nights ago. I’m sorry that we are meeting under these circumstances, but it sure is great to talk to people that understand. I understand your frustration with doctors. I have seen countless doctors and specialists since my 7/3/07 car accident. I am in the process of trying to get in with a Chiari specialist in Seattle. I was diagnosed with Chiari and Syringomyelia by a Neurosurgeon about a year ago, but he didn’t seem too concerned. My symptoms/pain have gotten significantly worse, especially in the last couple of months. I’m glad to hear that your surgery is scheduled so soon:) Please keep us posted on the process and your progress. I hope to be right behind you!
I have a copy of all my reports and have a copy of my MRI on my computer. I work in conjunction with the radiology department at my hospital (I'm a transcriptionist) so I have access to all my records even before my doctors do - I just don't always know what they mean in relation to each other :)
I knew that 7 months is actually quite a short time to get this diagnosis and I am quite thankful it hasn't taken me as long as it has others.
Welcome, Leslie! We're glad you found us! I'm glad that you got diagnosed, and are now on your adventure to more answers. I was in your shoes about one month ago.
You'll find we're all very helpful here, and you can ask us anything, we're willing to share.
I am praying for you, and hope that you will find all your answers you need.
I am just a little ahead of you. My surgery is scheduled for November 23. Let me know if there's anything I can do to help!
I am glad that you were finally diagnosed, too! Your story sounds so similar to the rest of ours! We all went thru hell before getting our diagnosis of Chiari. It is a relief to know what is really wrong with you, isn't it? Glad your surgery is scheduled and hopefully it will be successful and relieve some of your symptoms. Good luck to you! Have a great Thanksgiving and keep us posted on how you are doing. I will look forward to your posts :)