Chiari Malformation Community
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Hi, My name is Liv, I am 37 years old.  I have been having issues for about 2 years now on and off.  Over the last several months there has been a progression in my symptoms.  Just a month ago, my GP recommended I have a brain MRI to rule out MS.  My report came back finding multiple white matter lessions which they do not belive in consistent with MS as well as as Chiari 1 with a 10mm shift.  My 1st neurology appointment I was told the Chiari had nothing to with my symtoms (symptoms).  As of yet, I have no confirmation as to what is causing my symptoms.  At 1st they thought Lupus, they ruled that out etc.
Oh yes, also been given the waste basket diagnosis of stress and depression.
I have been experiencing daily headaches, electric shock like feeling in my neck, numbness occassionally in hands & feet, extreme sensitivity to cold, sensitivity to light, GI Issues, occasional ringing in ears, fatigue, brain fog, etc
I live in Brooksville Fl and there are no Chiari specialist in the area, I am in the process of trying to make an appointment with a Chiari specialist in Miami.
Just thought I'd intoduce myself, of course I am fustrated with the many Dr appoitnments and no answers and am worried about never feeling normal again.
Thank you for reading
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4816750_tn?1368808270
Hello and welcome to the chiari community and little piece of internet heaven.  You can read here that this happens to alot of them here.  The symptoms you say are part of Chiari.  I had alot of them also and didn't think nothing of them just wrote it off as getting older and falling apart.  That is why you see someone that knows Chiari.  From what you are saying the symptoms are have them check for a syrinx, selma can tell you the others she is the best here for that.  Keep us up to date on what is happening.
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620923_tn?1405964489

  Hi and welcome to the Chiari  forum.

So u r going to try to see Dr B. Green?...He is in Miami and a Chiari specialist....I have heard good things about him....there is a Dr  in the Orlando area too....not sure if he treats just Children or adults as well....

Find a Dr that knows this condition is frustrating ...we all know how u feel there....so many refer to Chiari as being rare,....it's not, there r far too many of us, it is Drs well informed and experienced with Chiari that is rare.

  MS, LUPUS and LYMES should all be ruled out as they have similar symptoms...and Drs even will give a mis DX bcuz it is what they r familiar with...,ugh....

But there r related conditions that should also be ruled out as they can affect how u feel and heal...so look at the thread  Co-existing conditions....

Glad to welcome u, but sorry u had to seek us out.
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Avatar_m_tn
Thank you for your response.
I have faxed over my medical records to Dr B. Green in Miami, I was told they would review my case and I should hear from them by the end of the next week to make an appointment.
My Dr's did rule out Lymes and Lupus, nothing definitive on the MS yet other than the white matter lesions that were found-  were non specific and not in the areas normally associated with MS.
Of course, like many of you, having access to so much information on the internet, I started researching as soon as my symptoms started a couple of years ago.  I swore I had Lupus, then I swore I had MS and know I think my symptoms are caused by Chiari.  They all share so many of the same symtoms (symptoms).  At one point, I had to tell myself, I am not crazy, this is how I really feel and I know my body.
I recently started worrying that I will never feel normal again, will I?
Will I ever be normal again?
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Avatar_m_tn
Thank you for the welcome and I am happy I found this community.  I will have to do some research on the syrinx you mentioned.  Is it normal for the symptoms to come and go?  Example, my feet go numb but it is not constant, they may go numb several times a day but only for a few minutes at a time.  The only symptoms that are pretty much constant are my headaches accompynied by facial pain and fatigue.  I also recently just started experiencing some discomfort in my neck, shoulders and back.  Thank you for listening, Liv
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620923_tn?1405964489

  It all depends on what u consider "normal" I think we all receive a NEW Normal......it may be an adjustment,but it is deff different ...Chiari is life altering as are most conditions...

The lesions could be the result of really bad HA's. I was told I had those too...

Chiari symptoms do cycle so the come and go is pretty typical.....

Know that  u r not crazy and u r not alone : )
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