Lyme/Chiari Malformation?

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Hello all,

So here's my story. Around one year ago, July 2012 I began having issues. . . went through a zillion blood test by my PCP and then read up on the Lyme diseases controversy on the internet and actually got diagnosed with Lyme disease by a "Lyme Literate Medical Doctor" in Nashville, TN. Then in September I broke my hip in my biking accident. After the fall my symptoms became much worse. I started noticing atrophy in my hands and shoulders around October and my shoulders would pop in and out of place more and more. Had tons of twitching all over, insomnia, continuing atrophy among a host of other things. I had a few fainting spells and ended up in the ER where I was diagnosed with a Chiari Malformation. I had surgery for the Chiari Malformation at the end of December and really felt better for several months, although I always could tell that my hands/arms/shoulders were continuing to atrophy. Recently, I have begun to go down hill again and the atrophy is really increasing in my hands and shoulders. I read this morning about "split hand" where your thumb side atrophies more than your pinky side and that this is a pretty specific sign for ALS. This is exactly how my hands look although on the back/top of my hand, all of my interosseus muscle between the bones appears atrophied. Now when I flex my thumb muscle I notice the muscle twitching, but only when I flex it really. I'm scheduled for an EMG on July 8th and then back to the neurosurgeon to check for problems with cervical compression on July 25th. I really freaked myself out this morning with the whole "split hand" thing, and my shoulders have been popping out of place more and more. The atrophy seems steady but progressive and I would like to avoid anymore more brain surgeries if this is all ALS, but I really don't want the ALS diagnosis. What do ya'll think about all of this?

Thank you so much!
 
And one more really important thing to add, my most troubling symptom is when I open my hand and then let it relax my fingers want to curl into a curved claw like position. . . Anyone had this?
 
And lastly, though I feel as though i have body wide atrophy at this point, my weight has remained stable for the last year. Am I over stating the atrophy?
 
They also found minor chiari on my MRI but the neuro said it wasn't noteworthy. I'm now going to an als specialist. The waiting game is tiring and even though no one wants this diagnosed, I would rather know sooner than when the problems get much worse. Good luck in your upcoming appts
 
If I understand you correctly, today you looked on the internet, found some new symptom that is a sure sign of ALS called "split hand" and decided that you might have ALS?

if there was a definitive test for ALS like "split hand", this is the first I have heard of it.

As far as atrophy goes, you had surgery, broke you hip and have been ill--if you dont'use your muscles they get smaller. that is not atrophy like ALS patients get.

I think you need to get off the internet and go back to a real doc not a "Lyme Literate" doc. No matter what--You do not have ALS. congraduations
 
My husband has ALS, but I have Arnold Chiari Malformation (Type I) and had the decompression surgery in 1986. If I was you, I would go to the very best place I could find such as: Cleveland Clinic, A University Hospital... and get the very best complete evaluation possible! In a nutshell, I had misdiagnosis and issues galore. When you have two different/possible different neurological problems they overlap in symptoms and it is very difficult for the docs. I thought I had MS for seven years, but I had (in remission) Sacoidosis... NeuroSarcoidosis which is rare. That wil the Arnold Chiari was crazy! Doctors don't know where one begins and one ends. There is a medical facility/hospital devoted completely to Arnold Chiari in Great Neck New York (Great Name huh?). They have seen so much AC there I'm sure they must have better answers for you.
Best Wishes! God Bless!
 
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