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mateo

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Sorry if this is long. Hopefully I can explain with as much detail as possible. I appreciate you taking the time to review my symptoms. I have been very worried about ALS lately, and can't stop thinking about it.

I am a 26 year old male. I have always been athletic and played a variety of sports.

My symptoms first started around 4 months ago with a twitch/tremor in my right pinky finger. I say tremor because it would start moving at rest, but once I moved it would go away. This would happen sporadically throughout the day. Then i started to experience twitching in my left eye. This was annoying, but I just chalked it up to stress.

Then in the last 2 months or so, I started to experience muscle twitching throughout my body. It started in my right quad area and then moved to my lower left calf. Then a few weeks later I started experiencing the twitching all throughout my body. Forearms, triceps on each arm, randomly throughout the day. Some days are better than others, and the twitching does not seem to happen constantly through the day. I read about potassium and magnesium deficiencies and started trying to eat more bananas and took a magnesium supplement. This actually seem to help the twitching significantly at the time.

In the last week or so I have started to experience muscle weakness, which is what has really started to make me nervous about ALS. The muscle weakness has mainly been in my thighs (quad), forearms, and shoulders/side of upper arm. Basically my legs and arms feel "heavy". It seems to affect both sides of my body equally. I have also started to experience a "sensation" in the tongue. I wouldn't really say it tingles, but more of a slight pain or just feeling of something weird. This also has scared me about ALS.

It's weird, ever since I started to experience the weakness, the twitching doesn't seem as bad, although the twitching still occurs mainly in my legs and sometimes in my left eye. I also now sometimes feel "cloudy" or some sort of "brain fog".

I do continue to play sports and other athletic activities, and have not really noticed a drop in ability once I get going. It is just hard to get motivated to do anything because I feel weak.

I must add that I do have a lot of stress in my life, as I just started my own start-up company last year. Add this with the stress of ALS, I am sure I am only making the symptoms worse.

Does anyone have any thoughts?
 

brooksea

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I believe you are stressed out!

Do you have constant twitches? By weakness, do you mean a real drop in ability? You are still playing sports and doing them well?

The twitches from my observation, do not move around randomly. they start and then stay in a particular area and then advance.

Others may have more to add.
 

guwainengle

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I hate to sound like the mad twitcher---- but I have had the random twitches/ tics/ and jumps and after all I have read -- it really is hard to tell which comes first-=- The twitch or the weakness--- the cramp or the twitch--- the specific area or the globus event. I can truthfully say.... The twitch/ fasciculation thing is enough to drive any totally sane person out of control. The worst thing about it is that it happens and happens again and no one can do anything to stop it
 

mateo

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The twitching actually mainly seems to happen when I am laying down or when I am trying to go to sleep.

The muscle weakness is what seems concerning to me. It does seem to be better sometimes, but never fully goes away in my quads. I still play sports and have not really noticed any significant drop in ability.

The twitches do seem totally random. The eye one is probably the most annoying, but only happens briefly every other day or so. I have had twitches in my lower quad, but my muscle weakness is in the whole quad. I have had twitches in my calf, but not experienced weakness there yet.

I am going to be going to the doctor next week, that's as soon as I can. I am assuming I should see my general doctor?

Thanks to everyone who has responded.
 

NvrGiveUp

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general doctor... good luck

Hey Mateo... my partner's general doctor told her she was going to be just fine. We thought ALS also because of her symptoms, but her doctor assured us that ALS starts in the legs, not the hands. I know this makes no sense to PALS, since there are many different ways ALS can present itself. At the time we did not know this. It had already been I think 6 months of non-stop twitching all over her body when she went to see the doctor(who was a new primary care physician for her). Previous docs said she was just suffering from fatigue and to sleep more, etc. The reason she went to the doc again was that her right hand showed definite muscle loss. So we demanded a referral to a neurologist anyway, even though the doc didn't want T to worry. The neuro will run lots and lots of tests to basically determine if you have ALS by a process of elimination (meaning if they can't find anything else that you might have, then you may have ALS). The neuro did at one time think T had MMN, multifocal motor neuropathy, which is often misdiagnosed as ALS. MMN is a hell of a lot better than ALS, but unfortunately, this did not turn out to be the case for T.

My advice is see your doctor but don't ignore your body's signs to you. I hope that you do not have it, but if you discover in time that you do, this forum has a lot of people who are going through it that can help you. If your symptoms persist, make sure to try to see a neurologist. Also, it would probably help to take it easy for a while if you can, to give your body and mind a little break. (I know, easier said than done.)

God bless,
Pam
 

guwainengle

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Your best bet is to get the EMG from a EMG expert at and ALS center-- Hope it is nothng other than stress. I can not accept that answer. Sometimes exercise does cause this to happen-- I know what you mean by the most problem issues in th eface-- it is so irritating and annoying. Mywhole body is going crazy after the initial eyelid/face and legs-- I consider this to be progressiing-- do you get any cramps?

Good luck and make sure you see a specialist- remember though-- clean EMG does not guarentee no ALS- there is alot of criteria to diagnose. But it will put yuo at ease a little bit.

G
 

brooksea

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I agree with G. Make sure you get to an ALS Clinic for EMG. Most neuros are not real familiar with ALS since it is "rare." This will be the fastest way to find out what is ailing you.
 

lhagsjr

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AnnMarie

u really got to chill out...
 

lhagsjr

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Worrying...

what does it accomplish though?
 

NvrGiveUp

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fine EMG

Hey AnnMarie,

Just wanted to let you know that T did have an EMG that was totally normal as far as anyone could tell (which you know probably isn't that "far"). :) All of her tests were normal with the exception of the electromyography test (I hope I got the name right ... I think it is also called a nerve conduction test.) The doctor wanted to explore the possibility that she could have MMN (multifocal motor neuropathy), and decided to treat her for that doing the IVIG therapy. She did it three times, each time took five days, about 6 to 8 hours each day hooked up to the IV. Thank God she had insurance because that treatment was $50,000 a pop ($10,000 each bag!). Crazy! The first time she did feel like she had more energy, the same the second time a few months later. Unfortunately it seemed the third time didn't have the same results and her symptoms had progressed, so her doctor did settle on the ALS as her diagnosis. She saw two other neuros that specialized in ALS to get a second and third opinion, and they both concurred. We both had prepared for the chance that we might hear what we did not want to, and what we would do if that happened. We had a "scr#w ALS" attitude in the beginning, we're still trying to hold on to that frame of mind. The best advice I 've gotten here is to live in "today" and not to live in a future concocted of our worst fears. Seems to be working really well for us, and we face what we must when we have to. For now T is choosing not to face anything depressing until after the trip. I promised to try to do the same.
Also try not to read too much... it can put thoughts in you subconscious that you don't need! :) T has pretty much avoided researching anything because she didn't want to give herself any ideas to obsess on and possibly make reality. Sounds weird, I know... but could be something to it. My dad is also a big believer in metaphysical healing (thinking yourself well I guess?) I don't think that positive thoughts could do any harm. :)

God bless,
Pam
 

mamaoftwo

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Pam - that is so scary. I have normal EMG's so far. Visible right hand atrophy. Vocal cord issues, bodywide twithcing etc. All the usual suspects. No answer yet from the neuro.
With these issues, was T basically told if its not MMN then its ALS. I guess that narrows it down for a few of us... Ok, so much for being strong tonight!
 

puzzled36

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electromyography is an EMG. NCV is the nerve conduction velocity, which should be normal in ALS.

G
 

ltr

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lhagsjr said:
u really got to chill out...


Lou - that really wasn't necessary! I know you probably didn't mean any harm with that statement, because you and I have corresponded many times and you are a nice, compassionate person. But, sometimes we think things that we shouldn't say. Personally, I would have taken it as humiliating on this public forum, but yes, I am rather sensitive when it comes to myself and the people I care about (which happens to be everyone, even complete strangers!).

Annmarie and I met on this forum and have a friendship. I am familiar with her family, husband and son, and know that they would help me if needed. I know that Annmarie has continued to be a great wife and mother and takes care of her obligations even though each day is a struggle. My point is, this is her place to vent and get support, as it is for many of us. There is no one else to ask these kinds of questions to or to help sort out her advocating for herself. I know there are people on her who get on my case whenever I advocate for others, but, sorry for them, because it is something I will always do.

Let's just all remember, we are all sick and for some of us, this is the only place we have to communicate what we think.
 

NvrGiveUp

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oops

puzzled36 said:
electromyography is an EMG. NCV is the nerve conduction velocity, which should be normal in ALS.

G

Hi puzzled, oops, I got confused. What I do know for sure was the nerve conduction test was abnormal for T and her EMG was fine. I don't know why I confused electromyography with nerve conduction? :oops: But I know that in T's case, the EMG was fine and she had more than one done (both fine). Her nerve conduction test was abnormal, which she also had more than once. Mamaoftwo, I'm sorry that I scared you by sharing T's EMG results. I think that positive thinking is probably the best weapon you have right now, I really think that it helps. My prayers go out to you...

Pam
 

lhagsjr

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AnnMarie & Leslie

I honestly am trying to work on AnnMarie to get her to try to stop worrying just a little bit less. Im trying to help her in my own way. The truth is im scared to death like you guys but my docs says no ALS so Im going with his words. I just thought the day she had the EMG she came back and immediately questioned the accuracy of it. Why even have the test done if u dont believe what they say? My only thing with AnnMarie is, I know she is sick and so am I. But she does not accept anything any doctor says anymore...Its like she wants the DR to say ALS. Be happy he isnt saying it and continue to try to get help and get better...
 
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