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hh1313

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Hi everyone, I'm 44 year old woman with weird symptoms and Dr Google has me freaked out. First I've had little muscle twitches for 15 years an nothing else too noticeable until 2 years ago. I had some neuropathy type feelings in feet they ran mri and a ncv at the time. I did OK until about 2 months ago when a storm of neurological symptoms hit. I had a back pain non injury related which they gave me a steroid burst for. After steroid the following symptoms hit and seems to be that I get a new or worsening symptom every couple of days. These r from my health journal yesterday. I know some don't seem to be als like tingling and stinging is this correct? Your opinions?

Tingling was more like a 5 yesterday
Muscle twitching increasing to 7
Muscle cramping a 2
Right quad smaller than left
No headache
muscle fatigue more than weakness
By end of day felt like tingling was a little better than yesterday but muscle twitching worse and stinging skin in feet knees hands and other places.
Tingling and twitching whole body same with muscle fatigue.

Any opinions to ease my mind?
 
HH, thanks for the detailed post. I don't see any reason to think about ALS, but there is something that needs to be seen.

Don't sweat the muscle twitches. People twitch in all sorts of different ways, and it means nothing important.

If you have muscle cramps, a doctor can usually fix that pretty easily.

Are you taking some meds that could cause all this?

Anyway, I'm not a doctor and I don't want to pretend that you can be diagnosed over Internet. All we can really knowledgeably comment on is ALS, and I don't see any ALS in your future.
 
Thank you for your response Mike. No, I'm not on any medication, they've looked at electorlyte imbalances, I do have one thigh (dominant one) that seems to be shrinking. Went to the neuro yesterday and he ordered bloodwork and mri but no emg. He said what I've been reading that ALS wouldn't have the tingling sensation. My worry is that is the part going away and the muscle fatigue is horrendous now, along with the twitching and cramping. Thanks again for the input.
 
A "horrendous" feeling of muscle fatigue is a good sign, re: ALS. It means that your muscles are telling you they overworked. In ALS, that doesn't happen.

It's important to remember that ALS isn't a muscle disease. It's a brain disease. ALS destroys certain nerves in the brain and brain stem that normally tell your muscles to contract. Since the nerve is destroyed, it can't tell the muscle to contract, and the muscle doesn't go. So it looks like "my muscle is weak" but in fact it's "my brain isn't telling my muscle to work."

The big difference--how you can tell between the two--is that, in ALS, there is no feeling of weakness. No feeling of fatigue, tiredness, tingling, numbness, weirdness, or any other feeling. There is not any sensory input. There is no difference in the "feeling" nerves. Only the "motor" nerves are affected.

So the arms and legs feel fine. Nothing different from when you were healthy. They. just. don't. go.

You are feeling terribly fatigued. Congratulations! (from our point of view). That's not ALS.
 
First let me say thank you to all of you who are suffering with this horrendous disease or a loved one who has or is fighting this. I'm so sorry you have this to bear.

I know after reading a lot that sensory issues are not or don't point to ALS. I appreciate you all being patient and educating me. I am an only child, single mom, so leaving my kids frightens me as I have no one to leave them to. That being said, this is not a pity pony, just a gratitude for reassurance.

I do have muscle atrophy in dominant thigh of 2.5cm, getting an emg scheduled, did mri and bloodwork on Friday. Thank you all again for the selfless care you give to those who are frightened. Would atrophy happen before muscle weakness or after? Meaning I can still walk, do a wall sit for almost a minute, but that muscle is then fatigued like crazy.

My tingling/bug crawling sensations and twitching were really bad yesterday, so I will take that as a good thing from what i've learned from you. Bless you all for your time.
 
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As a note for future readers, steroids can do all kinds of mischief and absent a firm diagnosis with demonstrated unique benefit from their use, I would not use them. As that is water under the bridge, I would see your primary and ask about PT/rehab/massage for your back and legs, and maybe start/go back to something like swimming, Pilates, yoga. The "new or worse" symptom every couple of days says referred pain to me -- your body is overreacting to stimuli and needs to reset.

The new EMG will of course clarify whether you have nerve damage or impairment.

Don't neglect your sleep and inner peace, either.

Best,
Laurie
 
Thanks Laurie, I wasn't aware that a short tapered steroid can do such harm (as told by my pharmacist), I have since learned that. Again, thanks for the advice and reassurance. I will always be an advocate in doing what I can to bring awareness and compassion to ALS sufferers and their families. Again, I can't thank you enough.
 
Hi guys, I'm back and want to get some clarification. I apologize if I'm wasting your time. I had an MRI normal, blood tests normal, EMG will be scheduled when neurologist gets back in town.

Need some input. My muscle twitching is constant in my legs and feet now, with sporadic twitching in arms, thumbs, occasionally back. I am extremely fatigued. My muscles don't seem to be too weak but more fatigued as I keep testing all of them and measuring them (yes, I know psychologically I'm not well with this ALS fear). Symptoms did start with tingling but don't have that as much now, just muscle twitching, cramping and weakness and fatigue. The cramping is light but more like a pulled muscle instead of a balled up cramp feeling. I've been reading some twitching happens all over body with ALS and then some ALS sufferers saying it was localized, so I'm confused. I've read BFS site as well.

I'm a little more worried now about ALS after clean MRI. Really thought it was going to be MS. I was doing better when I had tingling but now that's gone.

Any input on these symptoms? if they still sound non ALS, I will go away and stop bugging, just really worried.
 
input = symptoms overwhelmingly non ALS.
 
Update point toward ALS? Re: Worried sick!

Hi everyone, I'm getting worse so my gp, because neuro is out of town, ran a cpk test. My level was over 900.

Does this still point away from ALS like you say?

Muscle twitching, cramping, and every muscle weakness. Not a specific muscle, all 4 limbs.
 
All 4 limbs at once? Not ALS.

In ALS, the damage is done in serial order. ALS will attack a motor nerve in the brain and destroy it, so that particular motor nerve cannot send a signal to its corresponding muscle. This causes the muscle to lay unused, limp and useless--paralyzed. ALS continues down the line, destroying motor nerves in the brain one-by-one until the whole body has become paralyzed. This takes time: months at least, usually years.

It's important to note that the nerves affected are motor nerves, not sensory nerves. When a muscle has become weakened by ALS, it does not feel weak. It's not exhausted or fatigued because that muscle has not DONE anything to make it tired. Your hand (or foot) feels normal--it just doesn't GO.

Also, I'm no expert on this, but I'm pretty sure that a high CPK is indicative of muscle breaking down, sometimes from exercise, or a heart attack, or a trauma. I've read that on occasion, a doctor will hospitalize someone until the CPK comes down around 100. Someone else may chime in, but I don't think ALS will raise CPK nearly as high as 900.

HH, I'm really sure that looking into ALS is a big waste of your time.
 
Thank you again Mike, you've been very kind. I really appreciate your help.
 
Hi
I do have high cpk it has been up over 1200 at times, it muddied the waters diagnostically in the early stages. I ended up having loads of cardiac tests all negative. This can be caused by lots of things and its worthwhile getting your GP to investigate systemic or auto immune causes rather than als, given your symptoms it's better to cover all possibilities, as they are not sounding like als.

I have had sjogrens connective tissue disease and fibromyalgia for many years which have caused pain and extreme fatigue itching and tingling. I am extremely familiar with those and had the illnesses under control.

My als didn't present with fatigue or pain things just stopped working. Get your diagnostic process widened to cover all bases.

Wendy
 
Thanks Wendy! So far all autoimmune tests come out negative (ANA, sed rate, etc.), however, I highly suspect autoimmune since I have an autoimmune disease already ITP. I've had health issues for 15 years they can't explain and really bad last 2 years. Then the last 3 months have lead to all of these muscle issues. I will be following up with whatever I can and hope for the best. I appreciate everyone's kindness on here. My heart hurts for all those who suffer or watch others suffer from ALS and other health conditions. Thank you again for your kindness!
 
Hi,
I'm going to put on my doctor hat here. A CPK of 900 or higher would be very unusual in ALS. CPK may be mildly elevated in ALS, but probably more in the 200-500 range (under about 160 is considered normal.)
With symptoms in all 4 limbs and a CPK of around 900 or greater, I would want to rule out a myopathy. There are many different types, but unlike ALS, the primary problem is in the muscles. The nerves are fine. EMG is an important test in myopathy, but muscle biopsy will ultimately reveal whether or not a myopathy is present, and what type.
Prednisone and immunosuppressants can be helpful for the inflammatory myopathies.
Good luck,
Karen
 
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