I have been having numbness and tingleing in my arms, hands, legs, and feet, sometimes they even turn blue
I also have a burning pain in my upper back and accross my shoulders that also goes down to my arms and hands and then it goes from my hip down my leg to my feet . The migraine headaces are horrible and I have a constant pressure in the back of my head and neck. The pain seems to be worse on the right side of my body and it somtimes feels like my head could explode frome the pressuse and pain behind my right eye. Also my lab test showed my body was not producing any b-12. I had an mri where my dr was checking for somthing else in my neck and the malformation was found but he says that it is nothing to worry about and is very common. He wanted to send me to a pain management dr. I don't really think he belives me about the symptoms. Please help!!
It does sound like ur issues can be chiari and chiari related issues.....u will want to get copies of those old MRI's and get some new ones done to see if there have been changes...but, u really need to know if u have a CSF obstruction...and if a syrinx has developed....that can be something to be concerned about and needs attention.
The fact ur body is not properly absorbing vitamins could indicate a related condition Ehlers-Danlos....so do get a full check up.
It's it awful when you doctor doesn't believe you. I have had that problem too. It was very helpful for me to have a family member go with me to all my doctor's appt. because they can also speak up for you and your condition's. I have a folder with all Mri's and other doctor report's so you can take it with you to all doctor's visit's if you seek other opinion's. I know this has helped me and also save's time. Just keep being persistant because you will find a doctor out there that will understand your issue's. By reading your symptom's it was as you were describing me and my symptom's. That is why every time I went to a doctor they diaganois me with something else because Chairi is had to find unless they are acctually looking for it. My headaches got so bad that I would acturally cry just to release some of the pressure. I hope you will find your answer's. Let us know.
Not sure u r aware, but chiari symptoms do cycle...so at times u may feel I am better and then u back off getting answers, this is typical chiari and how it goes...so do not think it went away...it may calm down, but depending on what u do activity wise u can cause it to flare up too!
well my dr finally ordered a brain mri and now he is saying after he has reviewed my case he now thinks the chiari is causing all of the symptoms and I am trying to get a apt with Dr **** Kim in Houston
also including a link for some info about chiari from Dr **** Kim
I have had this illness for a while now my first diagnosis was maniers disease then ad i continued to ge worse they found the malformation which was actually on the original mri. It took a long time for me to convince the doxtors my syptoms were real. They said all this things shouldnt happen but they do. It seems to me they dont really kbow about this disorder. This illness has robbed me of my life i am sick more then im not and all they want to do is give me nacotics. They say i could get a surgery but the risk is highr then thr benifit. I cant see a doctor outside my health plan so i am trying a holistic approch my synptoms are better but there are so many things that i cnt do any more it is sad my life has become this way
It is very annoying that this disorder is not well known. Keep in mind you know your body better than any doctor does. I think chiarians need to push for more research into the malformation and better educate doctors on this debilitating disorder
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