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josepescado

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I am in a situation where I suffer from increasing leg weakness. I've been using a cane for about a month now when walking more than a block, can't walk up stairs without use of a railing, and can't move some leg muscles at all.

This all began over two years ago when I began experiencing muscle cramps in both legs and feet in seemingly every muscle at one time or another. In July 2006 I began having some trouble walking due to a lack of foot coordination and then began noticing problems climbing stairs and hills. It has progressed to the point where my thighs have become particularly weak. I have also been experiencing small sporadic muscle twitching. I can still get around, but slowly and with difficulty. I'm afraid, though, that before long my right leg will be too weak to support me.

The first neurologist ordered an MRI and suspected a herniated disk in my back, but after nearly a year seeing orthopedic surgeons and physical therapists, I am now seeing a neuro-muscular specialist who suspected CMT but first performed some blood tests including Lyme. I tested positive twice for Lyme and had ten days of IV Ceftriaxone, but couldn't continue due to an alergic reaction. I'm now on my fourth week of Doycycline. I have not experienced any improvement, but have only gotten worse.

My neurologist is now talking about the possibility of a motor neuron disease. He also ordered a blood test for CMT. I just received a letter from the lab indicating that the test costs $3,355. I'm not sure as yet how much of it if any my insurance will pay. I'm wondering if I should do it, pay whatever, or maybe wait to see what develops.

So far my upper body feels normal and strong. My big question is, if my problems are due to ALS, then how much time might I have wait until I could reasonably expect to experience symptoms in other parts of my body? I've been reading the threads here and it seems that most people experience both upper and lower body problems pretty quickly.

Thank you all for whatever help you can offer.
 

CindyM

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Hi Jose- welcome to the forum although I am sorry for the reason you have to be here. You don't say if the new neurologist is from a certified ALS clinic or not but that's usually the way to go. The disease is just too rare and the regular folks don’t see it enough to make a good call. Plus there is not test for ALS, they rule out everything else first and make the observation when all four limbs show clinical involvement.

To add to your troubles, PALS (people living with ALS) are similar but each progress at their own manner and pace. But maybe some of our PALS can offer suggestions. I hope you have something else-preferably something treatable.
Cordially, Cindy
 

Jamiet

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If you had two positive lyme test, you need to look further.

Also, look further into the MND, if your doc is at all concerned, tell him you want a muscle biopsy.

Lyme does crazy things to your body, exactly what you say, but so does MND. Lyme would be a much better option

Demand an EMG and muscle biopsy, that will tell the story

rgds,

jamie
 

greg175csp

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I agree with Jamie.

Welcome to the forum:)
 

keith

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I agree that a muscle biopsy is in order, even though that may not give you the answer. I am undiagnosed for 11/2 years, but they think it is myositis. Myositis mimics als , also you should have your CPK levels checked. Normally an abnormally high cpk reading indicates a muscle disorder and not a nerve disorder.
 

josepescado

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Thank you all for the responses and the help.

I have had several blood test these past few months that have all indicated an elevated CPK enzyme count. The first was slightly elevated and the next two were much higher. The reactions from the doctors who have viewed these results are rather confusing to me. I guess the results haven't been THAT high to cause serious concern, only a kind of quizzical interest.

I'm seeing a highly regarded neuromuscular specialist, who specializes in CMT. The only options he sees for me are CMT or MND.

I found out that my insurance will cover the CMT test (it pays to work for the state!), so I'll go forward with that. I'll also ask my doc about a muscle biopsy.

Thank you all again,
Joseph
 

MtPockets

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Hi Joseph,
You did not say how high your CK levels were? Mine had gone to 3000 before we began to suspect something serious. I have limb onset ALS. It started in my feet, moved to my legs in about 6 months, and now 3 years later is in my arms, neck, and stomach. I have also lost lung function and 1/2 of my esophagus is paralyzed.

Each of us progress at a different rate. So don't consider my progression as to how you might progress, IF you have ALS. The most important thing when worried about this disease and having tests run is to get to the nearest ALS Clinic, where Doctors deal with this every day.

You can find the one near you by going to http://www.alsa.org/ and put in your zip code and state info for Doctors or treatment centers near you.

This is very important. Because there have been many people mis-diagnosed because they were using a Doctor who is not an ALS specialist. I wish you the best and hope that it is anything but ALS.

God Bless
Capt AL
 

crystalkk

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Hi joe,
Welcome to the forum. I am in the process of trying to find out what I have.
How was your clinical evuation, reflexes, etc.
 

josepescado

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Hello AL,

Thank you for the good advice and website link. I've been thinking that it is time for me to visit a specialized ALS clinic. A second opinion would be very helpful.

My CK levels were around 350 three months and more recently measured as high as about 750.

Take care,
Joseph
 

josepescado

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Hello Crystal,

You know I'm not clear about my reflexes. I've been reading about hyperreflexia and wondering if my doctor sees any indication of that.

Mostly my evaluations have concerned the weakness in my legs and the search for any fasciculations. I haven't had those, at least not much, until the past few days. Now suddenly they are occuring with regularity in my legs and back. This is another thing I need to email my neurologist about.

Take care and good luck,
Joseph
 
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