Hi again. Sorry to keep bombarding the discussion with posts!
Anyway - I am in the process of writing a research paper for my English class. I decided to write about how we are all not diagnosed in a timely manner for a lot of reasons: Docs think we are hypochondriacs, symptoms mimic other disorders, and mostly, some small town docs (like where I live) have never come across this in their whole careers.
My major in college is Human Services and I do not think it is a coincidence that I started this degree just before my diagnosis. I have no idea how I will do it, or even if I will have the energy to do it, but I'd like to use my degree AND disorder together to help raise awareness in my area and then hopefully extend it to other areas.
This is going to start with my research paper. I would like to quote real people (you guys) who have gone through this, specifically relating to how long it took you to be diagnosed and all the crap you went through to get that far with your medical professionals.
Obviously I will only quote your screen name here for your privacy (and because I don't know you by any other name, lol), but if you have another name you would prefer me to quote using, please supply that as well.
So,the three things I would like:
1. How long did it take you to be diagnosed since the first time you walked in to your doctor's office.
2. Did your doctors treat you like you were a hypochondriac and/or just stop wanting to deal with you at some point because they had no idea?
3. What name you would like me to use in the quote and Bibliography page.
# 1...took about 1 yr of actively searching for wait was wrong with me..see, many of my sx's i blew off.
#2...YUP...NL's in my case were the most useless doctors...never made me feel like a hypochondriac but never took my many sx's seriously...it was my primary that as that was the most helpful...by insisting I see a NS.
1. From the onset of symptoms, it took me 21 years.
2. I bounced back and forth between Neurologists, PCP's, and even an Nuerosurgeon, and despite a couple of MRI's that showed it, I was still never diagnosed until I got the reports myself and forced the issue. I was basically patted on the head and sent on my way, and told there was nothing physically wrong.
#1 - I first went to a NL 27 years ago for headaches, I was in high school at the time. He said I just had too much going on in my life - cheerleading, school, working and having a boyfriend and that I needed to give something up. I have been treated for headaches in various ways since then. Had an MRI of my brain 7 years ago, the Chiari was missed!! Finally diagnosed after my son was diagnosed 9 months ago. Finally saw a NL pa after a 3 week migraine. She agreed to my request to have an MRI. This confirmed the Chiari.
#2 - The only time I felt I wasn't getting treated properly was in the ER and they didn't believe me that the medcines they were giving me didn't work. The last time this happened they gave me the same shot I'd had in the doctor office the day before. I asked why I was getting it when it didn't work the day before. I was told to just give it time. HA! The NS that I see now didn't doubt at all how I feel.
Thank you! I will share my paper with anyone who is interested after it's graded. Since my surgery is in 6 days, it could be a while before I even finish writing the paper, but I will try my best to get this finished before my surgery (it will then take a few weeks to be graded).
I can't believe how long it has taken us to be diagnosed. It just baffles me.
I would be glad to help you, but it would be easier for me to do in another format if you do not mind:
Send your questions to me in a MS Word DOC to KennnyFlaming (AT)me.com. (of course chanchange (AT) to (@)
This way I think I could formulate my answers a little better ( 4 weeks Post-op and I'm Stilll having some concentration and cognitive challenges) Plus Ive been a college professor and thing a few more thought out sentences would be better for you than a statement here and there.
Took two years and four drs. First three dr s said my pain was nothing stress overworks tired from my kids etc. Finally switched dr again last april and she was amazed at how much pain I was in and did a brain mri right away got a call 20 min after the mri to come back in for another with contrast to make sure they weren’t looking at a tumor or something because my herniation was so large. And I had two surgeries 4 months later. Allison Payne. Any other question feel free to asking enjoy reading g other peoples answers as well last april I knew nothing about this and im still learning.
Sorry it took me so long to get back to this thread! I am 10 days post op now and ready to continue on with my education, starting with this research paper I was talking about! Thank you all so much for all your answers! Off to write my paper!
WOW...only 10 days post op and already to start up on your studies.....you amaze me!! God love ya. Just be sure to rest when your body is screaming for it!!!
This is the mom in me...be sure to drink plenty of fluids, eat well, rest and most of all...listen to your body....do not over-do.
1) I was diagnosed 9 Years after I first started showing major symptoms.
2) my doctors at first treated it as if I just suffered from migraines. I finally ended up in the Hospital for a 12 day migraines for the third time in a week. Finally managed to get an Emergency Room Doctor to listen to what I was saying. He jumped to run blood work and get a cat scan done. Once the intial finding was seen on the cat scan he scheduled me for a MRI. I am currently waiting to see a neurologist, but my family doctor just keeps telling me to go to the emergency room for the symptoms... I am also trying to find a new family doctor, she seems completely clueless as to what this is, or how to deal with it. Also seems to show no interest what so ever as to what it really is...
3) You can use my real name Shala Angeline Bradford
Glad to help! I am so inspired to hear that you want to use your degree to raise awareness...don't worry about the how....things always work out.
1) I first started having symptoms at the age of 13. My pediatrician shrugged off my problems, told me to take an iron pill for my anemia (he didn't even take blood work) and sent me on my way. I was diagnosed on 10/18/2011 at the age of 22, one week after having an MRI with a neurologist. It took about 9 years for a diagnosis, but after my pediatrician shrugged it off I discounted the it until my headaches were unbearable, my memory was blacking out, I was falling 5-6 times a day, and I was waking up with vertigo and nausea and it stayed with me until I went to bed at night, and sometimes it stayed for days. I also had extreme weakenss and numbness in both sides of my body. After about 4 months of that I decided to start to chase after an explaination.
2) I guess I kind of covered that in #1. The pediatrician that shrugged me off at 13 treated me as a hypochondriac and was sick of my complaining. My neurologist took me completely serious. (She also sees my mother for multiple sclerosis, so I think that impacted her reaction)
3) Katrina Swinehart
Thanks for doing this paper, and best wishes in your future! :)