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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index


So many people out here that know something is going on with our bodies and doctors just can't seem to find anything wrong. They look for MS, lyme, vitamin deficiencies, lupis among many other things. This is the approach that should be taken from a proffesional point of view.

But when everything comes up fine, the professional word begins to discredit us. They start labeling our symptoms with chronic fatigue and finally and most frusting is when the say its stress or anxiety. This can be the case too but lets face it, we all have stress in our lives. So they really need to look further in my opinion, to rule out other less common things, before they label us in this way.

My only advice to those of you on this path, is if you truly know something is happening with your body, and we know our bodies better than any doctor, don't give up hope, but keep searching. Be your own advocate, fight strong, but with dignity.

Let go of the stress in your life 1st of all because this increases your symptoms. Find something to focus on besides anxiety. Find a good group on the board that can help you walk through your frustrations. This has saved me!! With a clear head, you'll have better luck on your quest for answers!!

I wanted to share my story here because if it wasn't for another board members post, I never would have known what I know today. Knowledge is a beautiful thing...

My symptoms began in my early 20's, during the times of childbearing. I bagan having strange tingling that traveled down my arm and leg, only on my left side. I thought I was having a heart attack or stroke. I was going through a traumatic event in life so the dr was quick to diagnose this tingling as anxiety. And I excepted that for over a decade.

Then the tingling began traveling to other parts of my body. Fatigue just slammed me down. I had a brain fog feeling and was having trouble concentrating and finding words. I had extreme taccacardia, sleep apnea and bowl disfuntion. Then my legs started getting weak. Walking up stairs was horrible!! I thought the fatigue was causing this. other things started happening and a red flag went up that someting was happening. I went to 2 neurologists and my PCP but all of these professionals hit a dead end.

In the process of all this, I had MRI's and a lumbar puncture. This produced a headach so severe and has stayed with me until today. I became so weak, in pain and the only relief I get is sleep, which that is an unpleasant thing to because of the discomfort.

I then took out my MRI and started analizing this myself. Advice is to not do this but if I didn't, I would still be in Limbo, getting worse. I noticed my brain was lower than a normal brain. I brought this information to my PCP. He got very angry that I was looking at my own MRI.

I then took it to the neurologist that orderd the MRI and he opologized that he didn't see this himself because he just wasn't looking for it. He asked me if I was refering to Arnold Chiari Malformation. He was amazed that I had found this and agreed to have radiology take another look. A few days later, he called and confirmed my findings. But he said he wasn't sure if this would cause my symptoms.

But I had already done my research and yes, it could. I sceduled an appointment at the Chiari Institute in New York. There, they specialize in this "rare" brain disorder. But its really not rare. Its more common than we think. Its just unknown. Doctors don't know enough about this so they don't look for it. While in NY, I went for more tests and the radiologist there who is knowledgable of chiari said they pick it up alot in routine MRI's. But he said alot of the patients he see's going to TCI (The Chiari Institute) have found this on they're own doing research, because dr's give up.

So I went to TCI and I have Chiari and also a tethered cord. I will be heading to surgery soon and FINALLY can relax, except my diagnosis and feel validated and know I'm truly not crazy!! Its a great feeling.

I know this is long but I just want to get awareness out there. If I can help just 1 person, it will be worth it. Theres very little talk on this board about chiari so I figure I'll get the knowledge out there.

There are so many symptoms related to Chiari. You can find a form at TCI that shows the list. Here are a few...Either way, I wish all of you in limbo answers!! Take Care~ Cindy

Headaches in the base of your head that worsen when bending, straining, laughing or crying

pain radiate behind your eyes

Neck stiffness~ pain radiates into shoulders /arms

Light sensitivity~ Blurred vision~ double vision

Pressure in ears~ ringing~ sensitivity

Difficulty swallowing~ Sleep apnea

heart palpitations~ dizziness

Tingling~ numbness~ burning in extremities~ weakness~ stiffness

Bladder and bowel disfunction

Fatigue... And theres many more

I hope this is helful to someone out there!!

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