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Chiari Malformation Community
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522320 tn?1447040921

i really need some help plz

hello all and im so sorry we all have to suffer the way we do  i have suffered for 33 years with no diagnosis and i feel like i will die many days from so many strange symptoms so i was wondering if this disease can cause so many symptoms  as mine are so bizzare  and scary VERY SCARY i run to the emergency room so many times and i will not accept anxiety from any doctor i know myself too well when all this began i was 19 and just had my first child and he was about 9 months which was the happiest time of my life.... then it started and i have lost friends.... and family laughs at me thinking its all in my head im so scared i dont know where to turn anymore i even moved to my husbands country of egypt to try to find a doctor here to listen and ive been to maybe 20 or more in  the last 9 months  but not even close to a answer here just like in the usa and i have been to MANY also i had 2 cts of the head/no contrast about 3 years ago   but i just dont know if all my symptoms fit in this catagory of this disease and im sorry to ramble on and on but if anyone wants to hear my symptoms or tell me what test is good  to show if u have  this disease i will gladly give u a large list of them as i want to know whats wrong i have tried to be strong but i feel i have used up the interent cause i dont even know where else to look for the type of symptoms i have and without hope i dont know what i have left plz if anyone can direct me in a direction or tell me if my symptoms sound familiar to this dieases or any other i will be so appreciative!!!! thank u for listening and god bless all of the sufferers!!!!!
4 Responses
1041839 tn?1278685446
Hi and welcome to the forum! The only test that will show chiari is a MRI and a CINE MRI will show if there is a blockage of csf (cerebro spinal fluid). What symptoms are you having?
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

As Shannon as mentioned, have u had the tests and did u get the dx of chairi, syringomyelia, tethered cord, EDS, PTC....??

Once u have a dx u need to find a dr that specializes in these related conditions.....even DDD and spinal stinosis can affect  u like chiari can.

If u don't mind sharing a bit more of ur info we may have a better idea of where u r in ur journey.

"selma"

1144229 tn?1293440682
I want to hear the symptoms.simply to compare
Avatar universal
so many symptoms and very crazy symptoms as my NS told me. He said that if he didn't see my MRI he wouldn't have believed me but since he has seen it he believes me just because he knows that CM has many symptoms that DO cylce.

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