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TheDocta

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Jun 9, 2012
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Learn about ALS
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FL
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Orlando
Hello to all. First off I would like to say that the work you people do on this forum is amazing. The people with and without ALS. I have learned so much about this disease over the last few weeks and I really think you people have an amazing community of caring people.

Here is a little background about why I am here. About 2 and a half months ago I was laying at the pool. All was well. I looked at my leg and noticed these twitches. They were all over my calf muscles and looked as if something was jumping around in there. I googled "calf muscle twitching" and boom, you guessed it, ALS was the first thing to pop up. As I read more about the disease I got concerned but not too worried.

Here I am almost 3 months later and both calf muscle's have been twitching and jumping pretty much non stop. I am now more concerned. I have other symptoms like weakness and a lump in my throat but I feel the line between a real symptom and something in my head is very fine at the moment since I have read all the symptoms and am a bit nervous.

I think I am so scared because in 2008 I was diagnosed with Testicular Cancer. I had always been a bit of a hypochondriac, but thinking you have cancer due to symptoms you read online and then finding out you were right was not a good thing for me. Thank God today I am 100% healthy after a tough chemotherapy regimen. Today I am 29, and relatively healthy, except for the calf twitching, fatigue, and overall "muscle weakness".

Just for the record I have successfully done everything in this article two weeks ago.

Muscle Twitching Help: Foot Drop Strength Test for ALS - Yahoo! Voices - voices.yahoo.com

I apologize so much if I am wasting anyones time here. Just wanted to see if I could get a word of advice. Should I go back to living my life and put the constant muscle twitching and jumping behind me, or should I go to my doctor and have it looked at.

Thanks.
 
As we will always tell anyone that comes here:

If you have concerning symptoms--the first stop should be your GP. From there, the doctor will do an exam and determine if what you're seeing and 'feeling' is really there or if you're just 'hyper-aware' of your body.

ALS is rare--even more so in the young--and you are young. That is in your favor. Weakness and feeling weak are two very different thing. Read the post by sadiemae in this section.

See your doc--if they are concerned and think you need a neurologist--I have a great one in Tampa I'd refer you to. She's an ALS specialist-but she won't see anyone without a referral from a doctor.
 
Thank you for the reply. I will make an appointment to see my doctor on Monday.

Is the fact that I successfully did all the workouts in the article I linked to a good thing, or does it really matter? Is that a medically accurate article?
 
It's simply impossible to test your own strength--at least accurately--but I'll tell you this--I couldn't do those things if my life depended on it.

Your best bet is to stay the heck off those places -- a little bit of information that is difficult to understand even with those living with disabilities does nothing but increase anxiety in those that have various 'symptoms'.

You'll find good info HERE and on ALSA and other great sites-- but hey--I have a great idea, in light of your new-found knowledge, check out ALS Guardian angels and toss them a twenty!
 
Moderated again--that's five today. No, Ya hoo is not a substitute for a doc tor
 
I will check out the ALS Guardian angels for sure and make a donation. Thank you so much for answering my questions. I am very concerned now, but hopefully a doctors visit will give me some good news.
 
Docta

I would say worth a trip to your doc but way to early to be worried about Al. S. Does not sound like it. Now if over the next several months things are definitively worse-true weakness, profound atrophy,speech swallowing problems etc then i would pursue it more aggressively. Most important point. Don't waste time energy and your spirit looking for those symptoms. If you ge them you will know. I promise. These things aren't subtle.
 
Thank God today I am 100% healthy after a tough chemotherapy regimen.


Focus on the above sentence that you wrote in your post. That is all you need to know. You are 100% healthy. I wish you luck and if you have true concerns see a d octor but it absolutely does not sound as if you have anything to be concerned about.
 
Ok, so today I visited my doctor after four anxious days of waiting. He examined me, and I told him about my history and symptoms. I told him my fear of ALS and how anxious and scared I was. He told me that he did not think this was ALS. I asked him how confident he was and he said "I believe there is a less than 1% chance this is ALS."

He told me to begin taking magnesium, calcium, and potassium supplements. He also told me to begin working out again and running. I left the appointment still feeling a little anxious though. After all I still had the lump in my throat, and what I felt might be swallowing issues (could be anxiety).

I told myself I needed to run asap. I got home and ran a mile an a half in 91 deg weather. About half way through my legs felt pretty wobbly, but I did the run in 17:40. The last time I did that same run was May 18th and I did it in 18:28.

Is it time for me to close the case on this one or should I still be cautious?

Thank you so much to the amazing people on this forum for responding so quickly to me and for being so unbelievably supportive.
 
Oh honey, CLOSE the case.

RUN, DOCTA, RUN! As far away as possible. And DON'T look back.



(Another satisfied customer.)
 
I have some new information.

I was told my blood work came back with normal levels of magnesium, calcium, and potassium. I am now convinced that this may be ALS again.

Here are all my symptoms:
- Non-stop fasciculations in calf muscles. (3 months, 1 week)
- Lump in throat. Can feel it when swallowing. (1 week)
- Possible speech problems. Nothing profound, but my voice does seem nasally. (2 weeks)
- Weakness... This as in my legs feel wobbly. I am NOT tripping over things or unable to walk or function. (2 days)

Is it time to see a neurologist?
 
I don't know why you believe that normal mineral levels suggests that you have ALS.

I do know that the person best qualified to judge whether you need to see a neurologist is your doctor, so in the light of your anxieties I suggest you go back to your doctor and discuss them.

Good luck!
 
Sure, go see a neurologist.

What happends when they say you're ok?

GP's are pretty smart, if he said, less than 1% great, there you go. Congratulations.

Anxiety is a terrible thing. Put you mind at rest and have the Neuro give you the once over.

Good luck,
Casey
 
Thanks again to everyone for answering my questions. I tried to make an appointment with a neuro today but do not have insurance (due to my pre-existing cancer) so I was not able to find any in Orlando who would see me. :(

I am going to see my oncologist next week, hopefully he will shed some light on the situation for me, or refer me to someone who can run additional tests.

One more question. My legs started feeling weak like jello about 3 days ago. I ran a mile and a half yesterday and they feel extremely wobbly today. I have not had that happen after a run in the past. If I am able to do strength tests would that basically eliminate clinical weakness even though I feel wobbly? Also if this is ALS how fast do symptoms progress? Could I have more profound symptoms by next week when I see my oncologist?

Thanks again for all the help.
 
You ran a mile and a half in 90+ heat and you wonder why you feel like crap? Please, give me a break. Are you bragging at all you CAN do? Kid, if I could WALK a mile in 90+ heat, I'd jump for joy.

There are lots of other levels that can be checked-- namely B12. And---in this heat here--probably dehydration. Give the ALS fears a rest. Follow up with your oncologist and have your labs whatever to be sure the can cer is still gone--and LIVE YOUR LIFE.

But hey--spend $1500 on an EMG if it will make you feel better. They ain't cheap. If you have no insurance and no income, go to Shepards Hope--it's free. But certainly not for ALS fears.
 
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