Unofficial Symptoms List ~~

[selmaS]

Ok...we know what most Drs will accept as a chiari symptom...but, we also know we have many more symptoms that r chiari related that fall thru the cracks...lets make a list of all the symptoms not on the Official lists.

[Hayleyrose]

thank you selma x

[The_Marine_Corp_Brat]

I have and don't have either thank God!

[The_Marine_Corp_Brat]

I was dx'd years ago and my symptoms are all listed above and then some! problem being there are no dr.'s in my area that are specialists that deal with Chiari I also have a severe neck compression. I really appreciate your knd words and welcome! I will be posting more I see the Neuro tomorrow, unfortunately he is of the belief that the Chiari can't possibly be my problem! I have migraines (severe), Severe vertigo...and he asked me for a list of symptoms. Problem is when I gave them to him he handed them back to me and said that I couldn't possibly have all these problems fix it so I don't sound like a hypochondriac and bring it to my next appointment. He is one of the few around that even knows what cm even is! I am so frustrated so I am simply dealing with the headaches for now.

[selmaS]

  Hi and welcome to the Chiari forum.

Stormy is not very active right now... but I can tell u many of us have Hashimoto's as well...I do...I was on meds for almost 2 yrs for it, and post op from Chiari surgery my levels have been ok that I no longer have needed it.

As for the being cold, u might have a condition that is related EDS, and with that u could have Raynauds Effect....it does cause u to have cold hands and legs and feet...have u been tested for either?

[The_Marine_Corp_Brat]

I have Hashimoto's & Chiari's and lot's of other issues but what a combo huh! my levels are fine and I have the same issues with the cold! I am always cold and live in LA (Lower Alabama) so it's not exactly cool here very often and I am always cold! I have them same issues with body parts going cold on me and freezing all the time! I am glad to know I am not alone in wondering what's going on but levels being fine doesn't make a difference for me!

[selmaS]

  Hi, many of us with Chiari have been told similar things, it is an incidental finding, or the chiari would not cause those symptoms...but we all know better, we know how we feel, and there is no other dx to put the blame on....so we have to believe the Dr is just not well informed on how chiari affects us....

Once u get to a chiari specialist u will see a difference...more testing to see just how ur chiari is  affecting u and ur over all health.

I hope u get all the info u need, if u need to keep asking questions : )