Is this Chiari?

[footylad]

Hello,

I have had a range of diffuse symptoms for some years and am concerned that my symptoms may indicate Chiari.

From the potential list of Chiari symptoms available I have the following:

Dizziness
Tingling scalp
Pulse in head
Fullness in ears
Visual disturbances, inability to focus, blurred vision
Tingling / numbness in the extremeties
Vertigo from position change or sudden standing
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Neck spasms
Insomnia
Swaying
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Poor blood circulation / cold hands & feet (I have diagnosed Raynaud's)
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades (I have sunburn sensation on back)
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Skin problems

I am on an NHS waiting list for an MRI scan. Very worried and not sure how to manage these symptoms in the waiting period.

Grateful for any advice.

FL

[rod44]

Can you get a copy of the MRI report? I have had to apply under the freedom of information act, is it the same with the NHS?

Ray

[footylad]

I met with my neurologist. He said the scans of my brain and spine showed 'nothing serious'. I asked what that meant exactly and he said 'You should put this to bed now and stay away from doctors'. The consultation lasted about 3 minutes, no report, no notes, nothing.

[footylad]

Thank you guys.

[selmaS]

Also Raynauds can be Ehlers_danlos...I was DX'd with Raynauds yrs ago....and with my eval with my NL and NS at TCI I was informed it was EDS not Raynauds...but they r similar in how it appears symptoms wise.....

Connective tissue and Autoimmune disorders r drawn to us like a magnet...or us to them , I am not sure which...but do get checked for as many as u can....and talk  with rod44 to find out how to go about getting things done in Ireland.

"selma"

[*Stormy*]

Hi again!

Not sure how this will help but the sphenoid sinus is a large air cavity in your skull (below the pituitary gland) and is the largest one that communicates with your nose. I would think it being enlarged would confirm that you have sinus trouble.

FYI- Reynaud's syndrome can also be an indication of Chiari and thyroid trouble!! I always have freezing cold feet...my hands get cold as soon as I go outside or touch something from the fridge. Sometimes my whole arm goes cold while the other one is body temp!

I know that doctors don't want to investigate but they should!! You can get a simple blood test for lupus called ANA which will also see show some other autoimmune diseases and you can get a RF done for Rheumatoid Arthritis. I just asked my doctor to do it and it was as easy as her filling out the blood rec. So, there is really no reason for them NOT to do it :)

Carolyn

[footylad]

This is great advice.

I am in Northern Ireland which is part of the NHS system. Requesting tests like the ones mentioned is very new to me and I have been told to wait for the MRI scan as they will not undertake any blood tests until that happens (which could be 6 months away). Are these tests something that my GP could undertake or would they have to be undertaken by a consultant rheumatologist or neurologist. I had a scan about 6 years ago and was told it was normal apart from an 'enlarged sphenoid sinus' - but they never explained what that was.

I have been diagnosed with Raynaud's phenomenon (mainly in feet, which I though was from football)..the GP said most cases were benign and didn't believe it was necessary to investaigate to see if the Raynaud's was secondary to an autoimmune condition like scleroderma/lupus or other.

Happy for any opinions / feedback.

FL