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phishy402

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Hi Everyone,

To begin, this is the most informative, inspirational forum I've ever seen.

My 36 year old wife was recently diagnosed with monomelic amyotropy, and unless she is a 20 year old Asian man and I didn't know it, I'm having a hard time believing it.

The symptoms began in late 1999 with fasciculations in her right index finger. She was pregnant at the time with our first, and attributed it to one of the millions of changes her body went through, so we never sought help. It had nagged at her for a few years, but with the kids, new house, etc., we didn't pay it any mind.

In 2003, weakness began in her thumb/index finger, so she brought it up with her GP and was told to begin PT for possible carpal tunnel. This didn't help at all, so we were eventually sent for our first EMG. The Dr. made some funny faces whilst interpreting the results , and after abt an hour, had chalked it up to some old nerve damage which just healed incorrectly.

We were guilty of trusting anything the Dr. said (not me anymore), and were happy with the news, so we left it alone.

The weakness slowly intensified and cramping developed over the next couple of years, and spread to her forearm. Fascics are constant and occur from the right rear shoulder (almost her back)down to her fingers.

She recently was referred to a better neuro, who conducted another EMG. He noticed the weakness is only confined to the right elbow down to her fingers. Her 3 other fingers show no weakness. He also tested her left arm, which showed no irregularity.

His results led him to believe it could be "a couple of possibilities" so he sent us to Weill/Cornell in NYC.

The Doctor there did not want to put her through another EMG after only about 3 weeks, so based on the information from other doctors, he surmised the Monomelic Amyotrophy, and wants her to check in every 6 months.

This morning, she mentioned that her legs felt funny, and I notice some fascics there, with an occasional big toe wiggle in the right foot....our hearts dropped.

Some additonal info.... MRI's came out normal, Cornell Doc says he saw no upper neural involvement, and the we should have results of about 50 blood test in 2 weeks. Another interesting fact is that she was diagnosed with Lyme disease in late 1997. Didn't seem as interesting at the Cornell visit last week, so it didn't come up, but he was told about it today, after reading some interesting stuff on this and other sites.

I'm sure I'm leaving out some very important info, so please ask away and I'll give you all the info I can.

Thank you to the moderators and members for taking your own precious time to give hope to the throngs of strangers you help on a daily basis.
 

liz

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Monomelic amyotrophy was my first differential. Didn't believe it either - I was a 42 yo white lady at the time.
 

Lorie

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Liz Cute! I like the sense of humor!

Phishy-thats what we are here for. We all need one another in ways that other people wouldn't understand. Sad but True. Join us anytime.


Lorie
 

phishy402

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Thank you for the quick replies.

Liz - Were your symptoms similar, or around for so long as well? Has your diagnosis changed?
 

liz

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I have ALS - symptoms began 11/04. If you google "motor neuron disease" you can find out more about this array of syndromes.

Don't panic - whatever your wife has is obviously slow progressing, not necessarily an MND.
 

Jamiet

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If she has lyme, then, she needs to be treated again, possibly IV Rocephin for long term?
 

phishy402

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Thanks, Jamiet.

We rec'd a call yesterday that the blood test for her SSB(LA) IGG came back positive, so we're being sent to a rheumatologist on 3/13 for further analysis.

This is a strange one, as the research indicates Sjogren's syndrome, but she has none of the telltale signs....dry mouth and eyes.

I couldn't find anything linking this result with Lyme.

The neuro didn't think much would come of it, but he said he wasn't too familiar with this stuff in general.

Now we have to obsess over a new range of possibilities....uggghhh!
 

Jamiet

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You need to see a lyme specalist, not a rhumey!
 
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