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Jaime K.

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Oct 18, 2009
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Learn about ALS
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NY
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Etna
Hi everyone,

I'm a 29 year old woman with some worrying symptoms. I'm hoping you can help shed some light on this. Here be my (lengthy) story:

About 2 1/2 months ago, I noticed my hands were becoming rigid in their movements. I am a musician, and started noticing the rigidity when I practiced or taught violin. This rigidity soon spread to both arms, and I also began to notice it in the legs, feet, and back. It worsens every day.

The rigidity is what a previous doctor has called a "cogwheel" effect - a "chink-chink-chink" movement of the muscle rather than a fluid motion. She said she had only seen it in Parkinson's patients, but left it at that. It is very visible - I can even feel it in my back if I bend over to pick something up - chink-chink-chink. I also hear it in my breathing - a light hitching. Doing a basic neuro exam with my doctor, I can touch my nose with my finger and then his hand, but the movement is a little jerky and twitchy. While at rest, the rigid sensation is very much like when you're out in the cold and your muscles get stiff and freeze up. However, I have no tremors.

As for pain, I have on and off cramping now in my hands, and an on and off burning sensation in the tops of my feet (where you'd tie the shoe laces). That burning isn't like a muscle burn - it's literally like I'm too close to the fireplace.

I have twitching muscles everywhere, especially after I have moved that particular muscle. Any exertion makes the muscle tremble. Even smiling makes my lips/cheeks tremble.

I have read that ALS includes muscle weakness, and this is where I am confused. I am not weak in the sense of grasping or turning knobs. I can squeeze things quite tightly. I can pick up my cat, grocery bags, violin case, etc. I can even hop up the staircase (though I pay for it with burning legs). However, holding something up, such as the violin, makes the muscle burn within seconds, like I've been working out all day. That is the fatigue/weakness I have. Every movement, especially in the arms, leads to a muscle burn.

As for doctors and diagnoses - the first doctor I saw thought it was stress and that it was all in my head. Another doctor could not see the rigidity even though I could see it and clearly feel it (again, all in my head). The third placed his hand on my arm and felt the rigidity (yay - not in my head!), ordered a bunch of blood tests, and referred me to a rheumatologist, whom I have yet to see. All we know from the blood tests is that the muscles are inflamed. His preliminary diagnosis was polymyalgia rheumatica. I'm not so sure (especially as it is very, very rare in folks my age, and the symptoms don't quite fit).

So...that brings me here. What do you all think?


Thanks for taking the time to read all this. I'm pretty frightened and just wish to know what on earth is going on.


- Jaime
 
Jaime,

I am not a dr but it doesn't sound like ALS. When is your appointment with the rhuemy? It sounds like your sed rate is high that's why he said the muscles are inflamed, which also points away from ALS.

Hang in there,
 
Crystal,

Thank you so much for your input. It is very, very comforting.

Yes, my sed. rate was elevated. I had not found any info about ALS and an elevated sed. rate, assuming that ALS involved inflamed muscles. So this is not the case?

I don't know when the apt. with the Rheum. will be. My doctor's office said they would set up the apt. and let me know within a few weeks. This was last week. My worried husband is ready to haul both of us back to the doctor's and demand I see a specialist asap.

At this point, I wouldn't mind trying the more aggressive approach. :)


- Jaime
 
It sure does not sound like ALS to me. If it was you would have experienced muscle weakness first and that is clearly not the case. I think you can safety put ALS out of your mind.
 
I play cello and trombone and understand the bit about your muscles getting fatigued just holding the instrument. The kind of sensory issues you have could possibly some variant of MS. The way it is usually detected is via MRI and lumbar puncture (spinal tap).

The polymyalgia rhuematica diagnosis could be correct. A lot of these disorders don't always follow the text books.

Zaphoon
 
Joel,

Thank you for your input. When you speak of muscle weakness, what exactly does that entail? I've just been so confused with all of these symptoms, and it is very comforting to be speaking with folks who understand and can provide insight.

Thank you so much!


- Jaime
 
Zaphoon,

Yes - it is really maddening trying to play an instrument with this! I worry that my students can see that things aren't quite right with my arms/hands. As of yesterday, I started calling parents to put the studio on hold while I rest and figure out what is going on. It is physically too tiring to teach now. :/

I had a CT scan done on my head in May for a concussion. Everything looked normal - though I don't know if MS would show up in a CT scan.

I did have an MRI a few years ago on my head to check for MS, and that was clear as well. I wonder if I need to go in for another test.

I will ask my doctor to elaborate on his polymyalgia rhematica theory. I didn't know what it was when he told me, and he didn't really explain how he came to that diagnosis (though again, it is preliminary as not all the blood tests are back yet).

Thanks so much for your help!


- Jaime
 
When I speak of weakness it means just that. If you had it you would understand what I mean. I am not trying to be smart here, so please don't take it as such.

What I first experienced was what I would call a loss of dexterity. It was almost like I had lost coordination. I was having trouble doing things with my hands. After awhile I realized that it was weakness that was causing the problem. Doing things like buttoning my shirt became impossible.
 
Joel and Jaime, I have only recently started to have problems with my right hand and not all of the time (all of my symptoms previously have been bulbar) but when my hand doesn't work the weakness is like when my hand is very cold. Not to the point of numbness but to the point where my fingers don't work anymore and it is difficult to hold a pen or button a shirt. I still can carry things with the hand but the fine motor control is not there.
 
I started losing weight first (a total of 60 #'s over 5-6 months). Than I lost all my muscle mass through my whole body. I have pain in various areas. I have no no strength and always tired. I have had every available test (as most know not many are available). I have been diagnosed by3 neurologist for ALS. What I have read in these forums is everyone is confused with different symptoms (including neurologist). I have recently started to experience some swallowing issues (not a good sign). I have a difficult walking with poor balance. God bless all of you that have or think this is your disease.
 
Joel,

No offense taken - no worries. :)

I have lost dexterity in my hands - I can feel the sluggishness when I try to practice. My fingers know what to do, but they are slower doing it. However, to the best of my memory, the loss of dexterity happened after the rigidity started.

Do you experience the cogwheel rigidity?


- Jaime
 
Barry,

I feel the same thing in my hands. It is like they are very cold - moving through molasses. I can hold a pen, but writing is very difficult. However, I cannot tell at this point if it is the stiffness causing the weakened feeling, or if the hand is actually weak itself.

I am sorry you are going through this.


- Jaime
 
Mountain man,

I am so sorry. I wish there were a magic wand I could tap and make all of the suffering go away. *hugs*
 
Barry, I am sorry to hear you have some progression starting in your hands. I have had quite a bit of progression since your visit a well. I am looking forward to another plateau. At least I am hoping there will be one, or a stopping of progression. LOL.

Jaime, I have never experienced stiffness, just weakness. I don't know if that makes sense to you?

Hang in there everybody! I pray a treatment, or better yet -a cure, happens in our lifetime!
 
Jaime, some of what you describe sounds similar to the "upper motor neuron" signs that can either be part of ALS, or a separate disorder called PLS. Generally, PLS is considered less dangerous than ALS. With ALS, both upper and lower motor neurons are affected. Upper motor neurons go from the brain to the spinal cord, and lower motor neurons go from the spinal cord to the muscles. Both are involved in movement but damage to the UMN produces more complex effects. According to my book on ALS, by Mitsumoto and Munsat (very good book by the way), signs and symptoms of UMN damage include:

Loss of dexterity: "a prominent and early sign of UMN dysfunction is loss of dexterity... This loss may be expressed as stiffness, slowness or clumsiness in any motion that requires fine movement, such as an rapid, repetitive motion of the fingers, feet, or even the lips or tongue."

Loss of muscle strength: "generally is mild and not as severe as seen in LMN involvement."

Spasticity: "Sometimes muscles lose their normal smooth action during passive movement, suddenly increase their resistance, then resist further passive movement. This particular type of muscle resistance is referred to as a 'catch'. However, when a sustained passive stretch is applied to spastic muscles, they quickly release the tension and relax, an event often described as the 'clasp-knife phenomenon.'"

Pathologic hyperreflexia (strong or "brisk" reflexes) and other pathologic reflexes.

[Hal speaking again here...] Your description of jerkiness in your movements sounds a little like this "catch" or "clasp-knife" spasticity seen with UMN damage, as with your loss of dexterity. However the burning pain does not seem to fit. And perhaps other things can also produce some of these symptoms. How about your reflexes, have the doctors mentioned that they seem unusual in any way? Also keep in mind that without LMN signs, diseases that are specific to UMNs are generally considered more favorable in their prognosis.

As far as hand clumsiness that Barry describes, I too have started to experience that a little bit in my right hand. My hand is weak so that I can no longer squeeze a "chip clip" (to close a food bag) between thumb and forefinger. I can work it fine with my left hand, but I am right handed. Also I am having trouble fishing around in my right pocket where I carry my cell phone, a pen, handkerchief lately because of PBA, change, and sometimes a bluetooth or car keys. Used to have no problem reaching in and pulling out what I wanted, but now I have to take things out one at a time, whatever is on top. I think a lot of this clumsiness is more UMN discoordination than LMN weakness.
 
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