It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

hello saint:)

Chiari is so complicated if you ask me my opinion.:(I had a whole lotta ugly symptoms when I first became ill,but most of them have diminished.I have a complicated B12 hidden deficiency.Low B12,Chiari and MS all have similar symptoms.So the neurologists I saw said that I needed to get the B12 treated first.They said Chiari is just a way to blame "other" symptoms on.:confused:

So I get monthly B12 injections and it has helped me tremendously.I still have problems,but mine seem to only flare up when I have menopausal hot flashes,night weird!I really think there's more to Chiari then the medical profession knows.How can some people have no symptoms or different symptoms?I was thinkin' maybe it's whether your CSF is blocked....then there are people who have the decompression surgery and do get better or don't get better or get worse.......what a "gamble" that surgery sems to be.

I know a girl that had the surgery and was okay for awhile and now her cerebellum has slumped back down Again!She had a 7mm herniation then had surgery and now it slumped 7mm Again!She takes topamax and klonopin and had horrible pain daily.Now they want to do surgery on her Again.....I think it's all so risky.....I don't like the odds of it getting worse,you know?

Would you mind comparing your symptoms with mine?Well here's my symptoms:
muscle weakness(arms/legs)better,but comes back when having menopausal hot flashes
spasms in throat(occasionally)
weakness in hands/feet(better,but gets worse with menopausal symptoms)
fatigue(most of the time)
frequent urination(most of the time)
urge incontinence(most of the time)
excessive thirst(always!)
pressure in lower legs(when sitting/standing/walking too much)
impaired position sense(has gotten better)
impaired touch perception(has gotten better)
shuffling like walk
simple sensory seizures(hardly have these now)
Lhermitte's sign(occasionally)
Romberg's sign(still have this....Always!)
Tinnitus(off and on)
Sore Tongue(better,but still sensitive)

Symptoms seem to get worse with hot temperatures and also some with cold temperatures

most annoying symptom is the muscle twitching in my ankles/feet

my herniation is MRI said it wasn't was just tonsillar ectopia...figure that one out.:confused:

the symptoms I had that are gone now are:
parathesis(pins 'n needles)in hands/feet
severe anxiety
breathing difficulties
extreme pain in whole spine
extreme pain in shins
taste impairment

So that's my history...the B12 has helped me so much,but I'm still not feeling great....some days I feel like I'm so disabled...other days I feel pretty good and other days I feel just like I'm existing.;)

I first became ill in 1996.....and in 1999 I was dx with hidden B12 deficiency and my MRI showed mild brain atrophy(no chiari) and then my MRI in 2006 showed no brain atrophy,but a 6mm herniation(with no other characteristics consistent with Chiari).

Well it's nice to meet you....sorry I couldn't be of more help to you..I hope you post back again:)take care~Scout:angel:

All times are GMT -7. The time now is 07:22 AM.

© 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!