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Old 02-07-2010, 09:39 AM   #1 (permalink)
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Default Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Hi everyone,

I posted a few months back about some worrying symptoms that might indicate ALS. The following is the original post:

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?


* * *

Since then, the burning sensation has gone and I have very little pain. However, the muscle twitching all over is constant, the rigidity and stiffness are worse, and I have lost muscle mass in my thighs, calves, and arms. Strangely though, my weight is steady. Every day feels a little worse, and the worsening feeling is uniform throughout all muscles (as in, not confined to a hand or foot).

As for doctors, it has been a nightmare of doctors and ER visits and bills, as I am sure many of you here are familiar with. I have seen three neurologists, an endocrinologist, two rheumatologists, and have had nearly every blood test known to man. I had an MRI of the brain that was normal, an EMG that came out clean, and all blood work looked good except for a positive ANA, elevated sed. rate, low vitamin D, and elevated cortisol levels (no surprise there!).

As for diagnoses, numerous doctors told me it was anxiety and wrote me prescriptions for Zoloft, which I refuse to take (I do take Xanax, though). One ER doctor diagnosed me with early onset Parkinson's, which was debunked a few weeks later by a neurologist. All three neurologists did not think this was ALS (however, my body behaved quite well during the appointments with very little rigidity, and I had not noticed muscle wasting yet).

Last week, a rheumatologist strongly suspected Lupus and then ordered more blood tests to be sure. The results of those tests will be available next week. He put me on a low dose of Prednisone, which does nothing but make me feel queasy.

The worsening stiffness, rigidity, and the muscle wasting are what have brought me back here. My faith in doctors is just as shaky as my muscles, so naturally I am on guard and worried.

Here are my questions this time around:

1. If the entire body seems equally affected, and notably worsens all at the same
time, could this still be ALS?

2. When my face tremors when I try to hold a smile or scrunch up my nose, or my leg
shakes if I try to hold it up for a few seconds, is the muscle fatigue the same
as weakness in ALS?

3. When I hold my hand out (like a high-five position) and slowly bend it down, is the
rigid "chink-chink-chink" an ALS symptom? (Someone mentioned in my previous post
that it could be a motor neuron thing, but I thought I'd toss the question out again).

4. What would an EMG show if I had ALS? Can a "clean" EMG be misleading?


Thank you very much for taking the time to read through all of this, and thank you again to those who replied to my last post. You helped me through a very rough patch on this frustrating, never ending quest for an answer.


- Jaime

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Old 02-07-2010, 02:28 PM   #2 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Jaime,

ALS does not present with such body-wide involvement and the weakness that it brings on does not go away but is progressive, taking a bit of time to spread from one region of the body to another.

Since you have had doctors rule out ALS, please find much comfort in this. Let's hope that the results come back negative for Lupus, too (it's another nasty one!).

I'm glad the early onset Parkinson's was debunked. Please take comfort in that, too!
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Old 02-08-2010, 06:32 AM   #3 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Thank you, Zaphoon.

While a diagnosis of Lupus is not one I'd like to have, this certainly puts my mind more at ease.



- Jaime
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Old 02-08-2010, 08:24 AM   #4 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Hi Jaime--

I had an ALS doctor tell me they suspected Lupus as well; and even though Lupus is a terrible condition, it felt like a relief considering it was coming from the mouth of an ALS specialist! Turns out a rheumatologist disagreed and didn't see any real evidence of Lupus, so I am also in the "undiagnosed" group.

It sounds like you definitely have something going on with your muscles, but it certainly doesn't sound like ALS. Perhaps those with more experience with this condition can speak in more detail about it, but I would take a clean EMG and a group of doctors who don't think it's ALS as a very, very good sign.

Best,

Andy
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Old 02-08-2010, 09:44 AM   #5 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Hi Jaime

Iīm dealing with a lot of the same symtoms.

The burning sensations epecially in my upper body started a year ago followed by muscle twitches starting in calves and now Iīve got it everywhere. I went to 1 NCT 2 EMGīs and some blood test but the experts said nothing to worry about.

The "cogwheel rigidity" is also something I have. Itīs very easy to see when I bend my arms up and down the movement is not a smooth continous movement but more like the"chink-chink-chink"-movement you . My rheumatolog saw it but had no comments to that.

My situation is this:
-Fasciculations everywhere (Face/arms/back/thighs/stomach. And in calves every second 24/7). Some of them moves a whole muscle.
-Flu-like feeling in muscles.
-Burning feeling in upper body (back/arms)
-Shaking muscles after exercise and when muscle are used(for example when leaning an arm on a table)
-Joint pain (especially in right albow)
-Musclestiffness
-Generally bodywide loss of muscle tone-even in face("Floppy" muscles)
-Excersice intolerance (used to run 5 miles daily-now only able to walk because of muscle stiffness/pain)
-Generally fatigue and tired even after 9 hours sleep.
-Dizziness


Maybe these symptoms are caused by some kind of autoimmune disorder or something else that cannot be detected by "standard-tests"
and perhaps a spinal tap could be useful to finally rule out what is going on. CIDP, cronical Lyme or heavy metal poisoning could be explanations for the symptoms.

Let us know if you find an answer to what causes your symptoms.

Best wishes

Mads
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Old 02-09-2010, 08:17 AM   #6 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Hi Andy,


Thank you for your message. I've been moved back to the undiagnosed group as well. The results from the blood tests the rheumatologist ordered did not suggest Lupus as he had previously assumed. While I am relieved this is not Lupus nor ALS, I am beginning to feel like I am truly crazy. Or at least headed there. It's a frustrating ride.
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Old 02-09-2010, 08:53 AM   #7 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Hi Mads,

Yes, your symptoms sound very much like mine. Have you had any progress at all towards a diagnosis? I have wondered about Lyme Disease, though I apparently tested negative for it in one of my innumerable blood draws. I hope future testing doesn't come down to a spinal tap. !
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Old 02-09-2010, 09:11 AM   #8 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

i just wanted to share a thought to the "unclassified".
i did alot of research on mitochondrial desease,this can mimic als and a wide range of neurological deseases.
not suprising that many neurological conditions can effect the mitochondrial function.
there are many undiognosed or wrongly diagnosed with other conditions who may have this.
diagnosed is by genetic testing (especially with family members known to have it or unexplained neurological illness) or muscle biopsy.
in some cases the desease can be there but not be detected.

i became intrested in this after another member mentioned it. also i had a baby brother who died aged 2yrs but never thrived from birth. he was tube fed,could not walk or talk.
this was around 1972 ,they did not know what was wrong with him and genetic testing was quite new.
i had genetic testing but they could not find anything.............having said that there are so many variants they can not test for.
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Old 02-09-2010, 09:33 AM   #9 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Quote:
Originally Posted by Jaime K. View Post
Hi Mads,

Yes, your symptoms sound very much like mine. Have you had any progress at all towards a diagnosis? I have wondered about Lyme Disease, though I apparently tested negative for it in one of my innumerable blood draws. I hope future testing doesn't come down to a spinal tap. !
Hi Jaime

I havenīt got any diagnosed yet. But things are getting worse. Today Iīm totally exhausted-with upper body-muscles burning and leg/thigh muscles twithing non stop.

It feels like a flu but it havenīt changed to the better in the last months.

I was also tested negative for Lyme in blood test-but blood test is so far as I know
not a reliable test. Spinal test should get more reliable results.

It would be very interesting to know if anybody have been tested negative in blood test but positive in spinal test and what kind of treatment that was given.
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Old 02-09-2010, 07:43 PM   #10 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Recommendation to long-time undiagnosed readers with similar symptoms:

Many things such as muscle floppyness, exercise intolerance, even neuro signs can occur with "mito" disorders, and the problems can occur anywhere or everywhere on the body.

If you have already been cleared by neuro, rheumatology, endocrinology, immunology, and other "conventional" specialists, then go back and re-read olly's post. It might make sense to find a specialist who works with mitochondrial disorders. The MDA or a university hospital can help, I believe.

At a minimum, you might try to use the supplements that mito patients use, to see if they can slow your progression down.
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Old 02-10-2010, 05:16 AM   #11 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

thanks rom

there are certain defining types with regards to the symptoms but it can like you said attack anywhere.
you can have symptoms of mnd,ms ,strokes to bowel,stomach and hearing problems.
it can be mild to severe with congenital mito disease sometimes being fatal.

i have read soooooooo much on this ,it is a very complexed disease .
i have always had my brother andrew's illness on my mind,i tried to ask my mum questions about andrew but she does not know much(no one really gave her an explanation )
my mum developed ME in her 30's ,has always had stomach problems like my sister and for some years now has had to use an hearing aid.
all this i found are signs of a certain type of mito disease.
i am diagnosed with pls but i have wondered about this even though genetic testing was ok.
i never had a muscle biopsy as i was told my illness presents itself as a cns disease and not a myopathy.

the boundries in neuro conditions are so hard to define,thats why they use the expression "umberella" for common symptoms/signs.
my neuro is a renound proffesor and even he admits theres so much he does not know after 40yrs .

so anyone with ongoing un-diagnosed symptoms need to look at there family history and see someone who specialises in this area when all other options have been explored.
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Old 02-23-2010, 08:45 PM   #12 (permalink)
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Default Re: Muscle Rigidity, Twitching, Stiffness Update - Still Concerned

Jaime K,

I can't understand why you are refusing to take an antidepressant when your doctor has suggested it. It doesn't mean that he/she thinks that your symptoms are all in your head. SSRI's, like Zoloft, are very effective in helping one cope - especially when things are complicated and undiagnosed. These drugs are also effective in diminishing the perception of pain and suffering. They are often used for managing migraines and other chronic pain.

Zanax may relieve the anxiety for the short term but it can have a depressing effect which is something that you don't need at this point. From a professional point of view, my experience is that a lot of people's lives have been greatly improved using this class of drug when necessary. Rather than making one feel mellow for a short time like tranquillizers do, this medication helps you cope by letting you think clearly, cope and move on to a solution.

Hope this helps.

ND
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