Worried about my symptoms

[TedH5]

Clean EMG is a great thing congrats! Perhaps you already answered this question and I missed it but have your Dr's found any clinical weakness?

Worry and stressing about a diagnosis you have not received and most likely never will is unhealthy and that anxiety alone will reak havoc on your body.

Others have said it best stay away from the computer and enjoy life. Life is short and wasting it looking up terminal diseases is a waste of precious time.

 

[WorriedAboutSymptoms]

I was able to go through the strength tests in the office without issue (walking on the toes, walking on the heels), however my biggest issue right now is walking. Walking is not particularly awkward, but after I stand on my legs a few minutes I feel like I need to sit down, because my calves begin aching and it feels like I just completed a 10 mile bike ride... I'm not overweight (I'm slim) and I've never had problems with walking up until about a month ago. My legs just feel very "heavy", especially my right one.

My worry is that because I did a lot of biking years back, my calf muscles may be large enough they could lose a lot of mass without major weakness being noticed.

 

[Anja]

that is NOT the issue i did lots of sports too, has nothing to do with ALS! If you have it it has nothing to do with it! Please forget about ALS, many other causes are more likely!

 

[patricia1]

Wait and see .

Try not to dwell and enjoy your summer .You will feel better getting off the computer . Anxiety can cause health issues .
Not saying you have anxiety disorder .But you can get anxious from the internet
This is a scary time for you .But if all the symptoms you have were from ALS, you would have something on your emg.
Have you started a exercise regime or over doing muscles you haven't used lately
If you aren't satisfied with your doctor go to another ALS specialist .

Patricia

 

[WorriedAboutSymptoms]

I got a message from the neurologist saying there were fasiculations detected during the EMG, which seems to go against the "clean" comment he gave me directly after the test. I also have some pretty major muscle fatigue in the calves and thighs and the fasiculations in my right calf have increased from about 10 per minute to roughly 48 per minute (I count them after recording a minute of video on my cell).

I can still walk on my heals and toes, but the fatigue is horrible and does not get better with rest. It feels like I have just run a marathon.... Yet I am still able to walk with the muscle fatigue, it is just very uncomfortable, and I am taking Ibuprofen to sleep at night.

I've also started waking up in the night with the right leg seeminly 'jerking' by itself, which of course makes me very anxious.

My neurologist is out until next week.and these new symptoms are making me even more worried it is ALS...

Does anyone know of anything (strength test, observation) etc, that I can do prior to next week to help calm my mind?

 

[clichti]

Hi there,

I wonder why your neurologist first of all didn't comment on the fasciculations at the time of your testing with your other results, and also why he or she would have called you to specifically tell you about them and totally freak you out. From what I know, benign fasciculations are easily apparent on an emg, and without w whole host of other evidence aren't really anything in themselves. I also don't believe that the muscle fatigue you're describing sounds particularly worrisome, but I'll leave that to the more experienced folks for commentary.

 

[Luke]

Hi,

Anyone who reads my first post will see I was pretty freaked out in the beginning, too. Lesson one - nothing external will reassure you. No Google article, strength test, forum post, etc. Only you can reassure you. Accept that there are some things you just can't know, at least not right away. Take stock of your current abilities - it seems you can do anything you want still - and continue doing what you enjoy. I got the "see me in six months or if things change" from my neuro at our last visit, and what initially felt like a dismissal now seems like a vacation from worrying, from dwelling, and from all the doctor appointments and stress. Bottom line - if there's some disease process happening, only time will tell. It will either make itself very obvious, or it won't. It took time for me to get to this place, and it didn't come from any amount of external reassurance. It's a decision you make.

 

[Relayer]

I have the same symptoms plus others I have had through the years. Lately the have converged to be closer or happening at the same time. As of two years ago I do not have ALS. If I didn't have it then how could I have it now? The falling down was worse in 2004 and 2005. But what is worse is that I look at my hands and they sometimes barely work. Rapid breathing and sever abdominal cramps worse than labor pains. It used to be just swallowing air and burping, and I thought it was anxiety but with no reason or stress. I was getting very tired and having yawning fits too. I am hoping there is some other explanation rather than some neuromuscular disease.

 

[nightwolf_mk]

Ask your doctor about Tizanidine. It is a medicine that is working for me. It helps with the stiffness, spasms and cramps.

 

[HelenL]

I believe Wright is our resident expert on EMGs, try talking to him if you can get your report (with the data)...

I'm no expert, but I don't think the fasticulations are the worrysome issue per se, I think it's the lack of "conduction block" that would indicate a different cause for them. Please do not take my word on it though, I'm NOT an expert and your neuro is. If he is not an ALS specialist, and you still have issues, ask for a referral.

Good luck and keep us posted. If your neuro says not to worry at this point, don't! Enjoy your summer!

 

[Anja]

In most cases fasticulations are nothing to worry about, they happen at healthy people and sick people, no problem, for example: LOTS of people recognise the fasticulations at one or both eye(s), has nothing to do with a serious condition, they occure and go away. The only thing to worry about is if the fasticulations are abnormal and only your neurologist can tell you if this is the case!

 

[WorriedAboutSymptoms]

So at this point I have been diagnosed with "possible ALS". I saw an ALS specialist and he said ALS and "Cramp Fasciculation Syndrome" were on the list... but since then I have begun to develop balance issue. I am unable to complete the toe to heel walking in a straight line, after I move the first foot in front of the other I begin to fall over.

In roughly one month I have the following:

1. Pain in both calves due to cramping.
2. Pain in the right foot when I try to lift the front of my foot upwards.
3. Very tight muscles.
4. Balance issues (I am also running into things).
5. "Buzzing" in hands and feet.
6. What feels like "bone pain" in one arm and both legs.
7. Fasciculations nearly 24/7 in my right calf, and also occasionally in my hamstrings, back, feet, and shoulder. These fasciculations sometimes subside greatly during the middle of the day, and seem the worst when I am in bed.
8. Night sweats.
9. Cramps in my right hand below my thumb (especially prevalent when I try to grip a pencil or pen).
10. I've also noticed when I walk it feels like my feet are not touching the ground like they should. I feel like I am walking on the sides of my feet.



Are these symptoms inline with ALS?

 

[Relayer]

Whatever you do DO NOT go to Stephan Scelsa at Beth Isreal.. if u have ALS you won't be diagniosed until you crippled and helpless