muscel weakness

[iren182]

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.

[selmaS]

  Most likely so a waste of ur time to go to...sad to say.....I had my visits like that too....what a waste.

[iren182]

Did your arms feel heavy and numb?

[iren182]

This is not a Chiari spesialist!  His field is epilspsy. He is probably just another dr that think Chiari 1 is nothing to talk about in the big picture of Neorologic diseases

[selmaS]

Well I had it and no syrinx....is this a Chiari specialist? I was told we can have upper body weakness...and that is one of the first things I noticed when my symptoms were increasing....

[iren182]

I am a bit confused. Today a NS told me that muscel weakness in arms could not be related to Chiari 1 if you dont have a syrinx?

[iren182]

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

[Viva001]

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.

Nasty, nasty creatures ticks!

[iren182]

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.

[Viva001]

You made me laugh, "looking like a French aristocrat".  Me too, & I am Italian, the only one in my family to sunburn.

Maybe "muscle weakness" is actually neurally mediated hypotension--your blood pressure going down from standing. (?). I have to lie down after every shower.

I also got sick permanently after a flu--a "last straw" situation.

I didn't know that Lyme's disease was in Scandinavia too!

[selmaS]

  Thanks for filling me in, I kind of felt that column might be the spinal cord, but I did not want to assume...lol...

Well once u find good Drs that know chiari and u like them we should get a list started....

Glad u have good health care....here we may only have it if we pay for it and getting in to Drs is a wait as well....so, it is not so different except urs is free.

[iren182]

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.

[selmaS]

  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.

Syringomyelia, tethered cord, sleep apnea,ICP, POTS, disk issues, scoliosis, ehlers-danlos, ....

I am not familiar with the terms Caput and Columna....may I ask u to explain what they r and how they r used?

[iren182]

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).