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Old 01-01-2012, 06:45 AM #1
LouiP LouiP is offline
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LouiP LouiP is offline
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Smirk Hi All, Thoughts Appreciated

Hi,

I am new around here, and would appreciate any incite onto my ongoing ordeal. Since March of 2011, I have been ill with a mysterious problem that no doctor, other than "Lyme Specialists," have been able to put a finger on. I have been diagnosed with chronic lyme disease, but have a hard time accepting that as my problem.

After doing hours of research online and reading posts from various boards, ACM 1 sounds like my problem. In my heart, I feel like that's whats causing all my problems.

I have probably a list of 30 symptoms I could share here, but I am sure you guys have heard them all before, and perhaps I will share them if you guys want to know.

The top 3,

Insomnia
Back of heard pressure-constant 24/7. Sometimes it gets worse, but its always a 2-4 on pain scale.
brain fog
POTS
Neck cannot hold up head

Anyway, This all seemingly came out of nowhere. Its been going on for 8 months and I am so tired of being in constant pain.

I am a 22 year old male. Was seen at Stanford for 6 months without them being able to tell me anything other than, I am depressed... that's a little obvious.

The Neurologist at Stanford does not agree that i have Chiari, but there is a noted 4-5 mm herniation, or falling of my cerebellar tonsils.

I have my mri images, and want to go to the Wisconsin Chiari Center.

However, I was wondering if anyone here could possibly take a look at my MRI images and see if I am just wasting my time looking for Chiari?

I just want to be normal again, know the feeling?

Thanks all,

I appreciate it.

Louis
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Old 01-01-2012, 09:06 AM #2
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razzle51 razzle51 is offline
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evidently the dr you saw knows nothing about chiari . your best bet is to go to Wisconsin . where do you live there might be someone closer to you.
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Old 01-01-2012, 11:26 PM #3
MAETIGGER MAETIGGER is offline
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Quote:
Originally Posted by LouiP View Post
Hi,

I am new around here, and would appreciate any incite onto my ongoing ordeal. Since March of 2011, I have been ill with a mysterious problem that no doctor, other than "Lyme Specialists," have been able to put a finger on. I have been diagnosed with chronic lyme disease, but have a hard time accepting that as my problem.

After doing hours of research online and reading posts from various boards, ACM 1 sounds like my problem. In my heart, I feel like that's whats causing all my problems.

I have probably a list of 30 symptoms I could share here, but I am sure you guys have heard them all before, and perhaps I will share them if you guys want to know.

The top 3,

Insomnia
Back of heard pressure-constant 24/7. Sometimes it gets worse, but its always a 2-4 on pain scale.
brain fog
POTS
Neck cannot hold up head

Anyway, This all seemingly came out of nowhere. Its been going on for 8 months and I am so tired of being in constant pain.

I am a 22 year old male. Was seen at Stanford for 6 months without them being able to tell me anything other than, I am depressed... that's a little obvious.

The Neurologist at Stanford does not agree that i have Chiari, but there is a noted 4-5 mm herniation, or falling of my cerebellar tonsils.

I have my mri images, and want to go to the Wisconsin Chiari Center.

However, I was wondering if anyone here could possibly take a look at my MRI images and see if I am just wasting my time looking for Chiari?

I just want to be normal again, know the feeling?

Thanks all,

I appreciate it.

Louis
That is a real shame you have a 4-5mm herniation & DR
doesnt agree that you have a Chiari ? Someone really needs to make these Drs go back to school. I mean they can differ in opinion on surgury but Diagnosis should be as plain as the picture on the Mri and the checklist of symtoms.Mri aren'r "depressed" people get depressed when they have chronic pain get treated like they are crazy when they seek help & dont get help! You need another Dr for sure!
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Old 01-28-2012, 03:10 PM #4
gmbbmom gmbbmom is offline
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" there is a noted 4-5 mm herniation, or falling of my cerebellar tonsils."
Then you have ACM, and you need to see a different doctor so you can get the help you need.
I have a 5 mm herniation and I suffer greatly with ACM. I too could write a whole list of symptoms that I'm currently experiencing. I have been blessed with wonderful Doctors. Find a Chiari specialist, and you'll get the help you need.
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