Chiari - Suggestions / Next Steps

[Bobbigirl1]

Hello,

Here's my back story:
I"m a 33 female, and in August I went to my family doctor for a yearly physical as suggested by my chiro. When I got an adjustment  i would become short of breath, and get hot flashes and dizzy.  My family doctor thought I had MS, and sent me to an NS.  Along with sending me to urologist for incontinence.  My NS said I did not have MS and do try PT , and see him two months. Well Two months past and PT did not help.  I had a follow up appointment with my family doctor last week.  In our meeting I told her that my pelvic floor specialist believes I have Chiara.  So on Monday they did an MRI and today they came back saying everything is normal.

headaches
pain in bottom of skull, top of neck, some times it feel like my head wants to burst
nausea
dizzy with vertigo
slurred speech or messing up sentences when talking, reversing words
forgetfulness
tingles in feet and arms ( even when walking)
pains in legs
tightness in chest, specially when taking a deep breathe. I easily get short winded, even in talking at times.

Any suggestions on what I should do next?

[Bobbigirl1]

Thank you for that information

[selmaS]

  They do MRI's of ur complete spine and a CINE MRI to check CSF flow....if MS was ruled out then u have no worries there, same with Lymes and lupus...that is blood work....with thyroid, many only look @ TSH and u need them to also look @ free T3 and free T4 and TPO antibodies....as we r prone to autoimmune thyroid issues and also connective tissue disorders....

With all the MRI's they will rule out a syrinx in all area's of ur spine as they can appear newhere in ur spine, disk issues, tethered cord....

[Bobbigirl1]

Next what other testing did they do, did they rule out MS, lymes, lupus? We all go thru testing for those as the symptoms r so similar.

My NS said that  I dont have MS, and told me to come back in two months after PT. When I went back in, he said stop with the PT and get needles in my neck. His words were "if they do not work, then we know we are looking for something rare"   the pain is not always in my neck
its mainly in the base of my skull

U will also want to get more MRI's to make sure u do not have other issues with ur spine, disk issues, or tethered cord or syringomyelia.

Good suggestions. I'm waiting for my doctor to call me back, I"ll call her again tomorrow
and talk about next steps

Then neuro exams for other related conditions like ICP, POTS, and ehlers-danlos.....sleep apnea, even vitamin and mineral levels as well as thyroid all need to be checked,

In August, they ran some blood work and found that my ferritin and Vit D is low

[Bobbigirl1]

my report said everything was fine.

I've compared my scan to a friend who has chiara, we look like brain twins!

[Bobbigirl1]

Thank yoU!

[Bobbigirl1]

Thank you for your reply.

She had another patient who has the same symptoms that I do.
She suggested I talked to me doctor and my doctor agreed that we should test for it.

I do have a copy of my MRI and the report, the report says things are good.
But I believe that they need to look at the tonsils? the report says nothing about the tonsils? Am I wrong about this?