anyone who have experience with entire body muscel weakness? And how long this attacs takes? Mine comes on a regular basis. Suddenly all of my muscel get so weak that I just fall. After some minutes i am abel to stand on my feet but I am wery weak after and have to lie down for about an hour.
It is possible to have muscle weakness with Chiari and Syringomyelia and related conditions...until u get testing to see if u have ne of the related conditions u can not assume it is Chiari alone...but it may be related to it....
Thanks for you for answer and welcoming me to the forum. I will se an NS here in Oslo 10.01.13. I got sick in august after a flu. Did not know about the chiari before i had MR caput taken in september. I find it strange to believe that all my symptoms are related to chiari alone. The strange thing is that the symptoms are quite cyclic. The tests i have been taken so far is MR Caput and MR Columna (dont have the answers to columna yet). I have observed that my hands, feet and face often get quite pale. I look like a french aristokrat....Can this be related to chiari? Maybe it is something with my circulation system (lupus).
Chiari symptoms do cycle...so it may seem strange, but it is fairly typical.
As for the pale face issue I am not sure, it could be circulation, as to the cause if it is not Chiari...? I am not sure...Ruling out Lupus, Lymes, MS is all a good idea and the Drs here routinely do that.
There r related conditions to Chiari and u should be testing for them as well.
Caput is head and columna is spine. I have recently been taken a spinal tap to see if i have lyme. I will have the test results of both MR spine and spinal tap in a coupel of days. The results will be sent over to my NS.The healt system in Norway is good in the way that you dont have to pay anyting - but the negative thing is that you have to wait for your turn - and it can take some time.... Well, I shall not complain. Many people are in worse situation than me.
My blood pressure is nearly always 110/95 (sitting, lying, standing) It seldom gets higher and when it does it can raise wery high for a short while (216/160 pulse106) and then back to normal again. Last week it was 89/48. Think i have read that this can be related to Chiari.
Have anyone tried Diamox. I am desperat to get rid of the head pressure. My head feels like a cistern. It fills up and when it flushes my muscels tone and strenght is like zero.
Lyme is a big discussion in Norway right now. The discussion is about the testing and the false negative results - and that the government is unwilling to help those who are infected.
Low or erratic BP is definitely related to Chiari, as well as erratic heartbeats (which can also exist without having Chiari).
My NS said that the flu is a particularly negative stimulus for Chiari patients.
Can you get a tilt table test?
My cardiologist told me to drink 2 c. of coffee to get BP up, and eat salty food. Sometimes it works, sometimes not. I can usually count on coffee to get me through what I have to do in the mornings. Ive been eating a lot of miso soup too.
Thanks for advice. I love miso soup.
I will have a tilt tabel test and one week EKG in jauary.
This sickness frustrates me - until august i was in good shape and lived a wery healty life. No i sit here with arms that feels like heavy dead fish. I hope better times will come. I miss my work so desperatly
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