Symptoms List Below
This list just blows my mind. I know I’ve been diagnosed for almost 3 months but it’s amazing to see everything listed so clearly. Like, oh wow I have that, and that, and oh my goodness that too! Wow! Makes me feel a little less crazy. Thanks for posting.
Thank you for the list Abby! I had NO clue that my severe cramping during my period “could” be caused my Chiari…
thanks abby for bring this up,
its always interessting to read the lists, its still amazes me how many symptoms there are,
joelene
I know, it’s crazy, right!? I feel the same way! Even though I was diagnosed 6 years ago, I still feel that way when my symptoms come back. I hope you are feeling ok.
tashasheart4u said:
This list just blows my mind. I know I've been diagnosed for almost 3 months but it's amazing to see everything listed so clearly. Like, oh wow I have that, and that, and oh my goodness that too! Wow! Makes me feel a little less crazy. Thanks for posting.
so is it bad that even 8 years post op that I have at least 95% of symptoms listed? saddens me that this my life and only others with this beast of a disease understand. is it ok to run copies? Im going to check off the symptoms I have and present it to all doctors and friends and family members. Just maybe MAYBE then they will have some idea of what I face on a daily basis. thanks so much for posting it!
thanks this helps alot can take to Dr which ones i got
You know,I once brought a NL a list of my symptoms and he took it and disregarded it.Basically told me I am so worried and causing my own symptoms and being on a message board hearing about them is creating them! Thought I was undermining him and actually bet his medical license on it! Can you believe that?! I should have got that in writing. lol I hope you have better luck than I did!
Ahh that sucks im already approved for surgery though just waiting on a date, but they called me in tomorrow for some reason i dunno yet so Ill show him the list then.
Good luck with your surgery 
TexasWhar said:
Ahh that sucks im already approved for surgery though just waiting on a date, but they called me in tomorrow for some reason i dunno yet so Ill show him the list then.
Oh hell no! Not seeing anyone and need to find someone here in VA.
Thanks so much for the list of Dr’s I see one in Norfolk VA that is only like 20 minutes away from me. I am going to make an appt with him to consult. At least I can try and maybe at least have someone to go to when I’m having symptoms and just be monitored.
Not counting the symptoms listed in the “Others” paragraph at the end, I have 48 of the 63 listed symptoms. 76% of the list and a visible tonsillar herniation on my MRI, but doctors are arguing over whether or not I have Chiari?! Wow, we have a messed up system!
Some Dr's are NOT on the Chiari Train. They just refuse to believe that Chiari has anything to do with our symptoms and question the Dx in a whole. Definetely messed up! It becomes very frustrating when you find out it is what you have and then to find a NL or NS who understands what we are going through!
my NS says "Im fixed Theres no reason u should have any symptoms now! sure than explain WHY I do still have the symptoms PLEASE!
Wish there was a quick fix! I'd be on it! Some Docs just don't get it!
i wish there was a fix too,
LIDIA...... we do feel messed up, i sometimes feel like my body is letting me down, and bit by bit its broken, everyday is so different, so hard to keep on track with it,
ive had just about every test to rule out thats its not my body, but everything is comes back negative, somedays you wonder whats the point, and then that day is over and another different day begins,
i think the most hardest thing with it is execpting that this is it, i hope you have some good support with you?
joelene
Will do Abbey. I had symptoms last night that I were hoping would not come back. I started gettting that breathing thing where I can't get a full breath and have to fake a yawn to do so. I was laying in bed and it started. Had a really horrible sleep, then of cours woke up with a slammin headache again! Ugh! So frustrating! It's been so long since I've had symptoms I kind of forgot and have to pull my diary i wroted just to refresh so I don't scare myself again. lol
I know the feeling Joelene. I’ve had probably same tests and everything negative. That’s why some dr’s thought I was crazy. They are not up to date with what Chiari can do to you. Very frustrating. Well, my biggest support is this site and my husband is just scared cause he doesn’t know what’s goin on. But he’s always making sure I’m ok. But really doesn’t get it. My parents are there for me too, I just don’t like to always bother them with this. It just worries them. I feel like I’m living in my own medical mystery diagnosis. lol Hope you are having a good day today!
joelene hossack said:
i wish there was a fix too,
LIDIA...... we do feel messed up, i sometimes feel like my body is letting me down, and bit by bit its broken, everyday is so different, so hard to keep on track with it,
ive had just about every test to rule out thats its not my body, but everything is comes back negative, somedays you wonder whats the point, and then that day is over and another different day begins,
i think the most hardest thing with it is execpting that this is it, i hope you have some good support with you?
joelene
I think that they know there is not much they can do and so that’s how they deal with it. I was always told just to take it easy, go home and relax, that it is what it is and try not to stress about it cause it can make symptoms worse. It’s like, “Oh, ok, well, thanks alot!” It’s like you just want answers. And they’re hard to get when you have what we have.