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Marcella

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Mar 5, 2012
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Learn about ALS
Country
UK
State
NY
City
LO
Hello

This is my 1st post but I have been lurking here for a while. My problems started a couple of months ago and while on a rational level I feel that I am most likely ok, I have a niggling feeling that I am not.
I got a twitch in my foot one day that didnt go away, after about a week I looked up 'twitching' and it brought me to ALS, this was in December some time. Since then, the twitching has become widespread and regular (some days there is more is more twitching in more places than others). Most of the twitching is in my right foot, at the side of my instep. I also get twiches on my left foot, thighs, calfs, hands, arms, buttocks, ribs and tongue. The twitches are usually singular in so far as it will twitch once and then stop and then some time later is will do it again. I have got a few multiple twitches in my hands and ribs but that doesnt happen as often.
My tongue is probably worrying me the most, it doesnt twitch or fasticulate while I am looking it at rest in my mouth, however it does when I stick it out and sometimes I can feel it twitching in my mouth(dont know if it is at rest or not when this happens). The tongue twitch sometimes happens after having a hot drink.

In the last couple of weeks I have developed a strange swallow. When I swallow it is like I am gulping and my throat makes a noise. This happens with liquids only, it is like sometimes I am swallowing too soon and the liquid doesnt go into to the back of my mouth. I have had no choking episodes or anything that would in anyway resemble choking.
I am experiencing some weakness in my left arm and left leg, however as this is a physical thing that I am feeling I am not sure if it in in anyway relevant.
I have been to my primary care physician who really hasn't given me any kind of reassurance, she just told me I am fine and she just looked at my tongue and said I was ok, she didnt do any kind of neurological examination and didnt feel that a neuro consultation wasnt necessary.

I suppose my question here is do the above symptoms make any sense and do you think I should be worried, my doctor wasn't remotely worried when I told her the symtoms and my concerns about mnd, but surely some sort of a neuro exam was warranted, or are the symptoms just not those associated with ALS and if not it really does hightlight the stupidy of reasearching symtoms on line.

Thanks in advance for your time and insight.

By the way, I am a 39 year old female in otherwise pretty good health, only other medical problem I have is chronic sinusitus for about 20 years.
 
Re: Worried about ALS - Ist post

Hi Marcella - I am not a doctor, but 4 of my family members have passed away from having ALS. Another one of my family members was just diagnosed with ALS. I remember when my dad thought he had ALS. The first 3 doctors told him he was fine. Finally, he went to a neurologist and was diagnosed properly (ALS). It's hard to imagine that it would take 4 different doctors to diagnose someone. With that said, you should go see another doctor. You do have symptoms of ALS, but I've said this before and I will say it again; ALS symptoms are equal to A LOT of other illnesses. Please see another doctor, maybe an ALS specialist. Good luck!
 
Re: Worried about ALS - Ist post

Twitching muscles are not normal. I would see a neurologist if it continues, or if you feel that a hand, foot or leg is not working right. I hope that you are relieved of this worry soon. It took almost a year for my pals to receive a definitive diagnosis and then it was a second neurologist that confirmed it.
 
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Re: Worried about ALS - Ist post

I'll tell you one thing.
Nothing will increase "twitching" like an increase of stress.
Your stress level is obviously elevated at this point, so it will only continue to drive you nuts until you get into see someone for another opinion.
Preferably a neuro.
Good luck Marcella, hope it's nothing.
 
Re: Worried about ALS - Ist post

Marcella...see a neurologist...I'm with Steve and Casey on this. Keep us posted.

Judy
 
Re: Worried about ALS - Ist post

Thank you all for your replies. I am really worried now, having been looking at this forum for a good while now, the general response to queries to like mine seems to be that all the good people on here dont believe that anything significant is going on.

Mpiresteve, I am so sorry to hear about your family history re: ALS this must have been a terrible ordeal for you and your family. When you say that you think I have the symptoms of ALS, is it a combination of the twitching and the swallowing or is it the tongue thing or is it the type of twitches that I am having. Again thank you for your Frank response.

Hangingon1 - to the best of my knowledge everything is working as it should be and the weakness is quite transient, here today gone tommorow kind of thing.

CGAR - you are right, I am twitching more as I read the responses to my thread. The stress is killing me and driving me nuts.

Cannot get an appointment with the Doc until Friday - really driving me nuts aswell

Thanks again.
 
Re: Worried about ALS - Ist post

Mpiresteve, I am so sorry to hear about your family history re: ALS this must have been a terrible ordeal for you and your family. When you say that you think I have the symptoms of ALS, is it a combination of the twitching and the swallowing or is it the tongue thing or is it the type of twitches that I am having. Again thank you for your Frank response.

The swallowing and twitching is the reason, but neither of them mean you absolutely have ALS. Just means you should keep going until you get the answers you want to hear. Please never assume you have ALS. It will only ruin your mind set. Even if you get the news that it is ALS, don't give up hope, as scientist are working very hard to find a cure.
 
Re: Worried about ALS - Ist post

Thank you mpiresteve and Judith Ann, it is very hard not to assume anything, I suppose deep down I knew I should be concerned about the swallowing thing and thats why I started doing my reseach. Thank you again, I suppose I was hoping that everybody would tell me the twitching was BFS and the swallow thing was stress and anxiety brought on by worrying about the twitches.
Thanks
 
Re: Worried about ALS - Ist post

Lets slow down...first of all despite some previous comments twitching muscles can be absolutely normal. Everyone has muscle spasms and the majority of the time twitching muscles are indicative of nothing and are benign. Sticking your tongue out and seeing it twitch is quite normal as well because it is a muscle and you are putting stress on the muscle so it will quiver.

The important question here is do you have any weakness? Not perceived weakness but actual weakness where you can no longer do something that you used to be able to do?

Twitching alone is not a sign of ALS. If you have real concerns see a Dr but as CGAR said making yourself anxious and stressing out will definitely make yout "symptoms" worse.
 
Re: Worried about ALS - Ist post

TedH5

Thank you - you have calmed me down a bit, I dont have any actual weakness that I can tell. Yes I have some transient feelings of heaviness/Weakness in one leg and arm but it comes and goes - and I suppose I wasnt really concerned about it as I have had it coming and going for years - it is not a new thing since the twiching started. I can still do everything I used to be able to do ( well I cant run 5K but that is due to lack of training!) I can do all the things with my tongue too, like sticking it in and out, tent my cheecks etc. Feeling my tongue twitch in my mouth is a bit weird, but that doesnt happen every day and I am telling myself if it was ALS related it would happen continously. The other twitches as I said are singular and sporadic, they do happen everyday but to a varying degree, again I was probably incorrectly assuming that if they were ALS related they would be continous.

The swallowing thing is a little bit freaky, the best way I can describe it is as if you were gulping back liquid really quickly and the throat makes that glug glug sound - does that make sense. As I said already, there is no struggle involved in swallowing and no choking - maybe it is due to my sinusitus ( I have a tendency to attribute everything to that - have had a few surgeries to remove polps from my nose and general sinus area over the years and have massive constant post nasal drip and I was telling myself the swallowing thing was due to that!).

Im not normally prone to hypochondria but I think I might have developed it in relation to these symptoms. I would probably be better off if I hadn't posted and everything would be gone in a month or two and I would look back and wander what all the fuss was about.

Marcella
 
Re: Worried about ALS - Ist post

Marcella,

You said the key words - no muscle weakness or transient muscle weakness. With ALS, the weakness begins and never subsides. It just progresses. If you are not getting progressively weaker, calm down. Go to the neurologist to assuage your fears.
 
Re: Worried about ALS - Ist post

Marcella, please do not worry about ALSuntil someone qualified says you have it. This is one disease you shouldn't even think about if you are otherwise healthy! Until you a start falling down and d lack the strength to get up, follow the advice of your Dr. GOD BLESS!
 
Re: Worried about ALS - Ist post

Whoa, I agree with Ted lets slow way down here.

Marcella, your symptoms you described were twitchiness, left and rt. arm weakness(not verified by gp), and a gp who feels that you are problably fine.

Twitchiness in, and of itself, is not a problem. Happens to everyone of us at one time or another..you must have other symtpoms to accompany, and you did not write any, so I would not be worried about that.

Possible weakness,..I said possible because your gp didn't tell you had it, you did. If you had said to your gp that you had any inkling of weakness in arm and leg your gp would have done a quick clinical test on you. Did they do so? Did you tell them about leg/arm...and if not ...how come? You might be confusing fatigue with true weakness here.

I am all for getting a 2nd opinion. If your symptoms persist, and your gp doesn't cooperate go ahead and find another.

When I read your post I thought maybe MS might be a high possibility for you. I would ask for an MRI of your brain to help rule out some things.

From what you wrote of your symptoms at this point, I personally do not believe you have ALS. Remember, I am not a MD, and no one here can diagnose you by relating their stories to you.

Good luck to you.
 
Re: Worried about ALS - Ist post

Thank you for your replies - I have really calmed down and am again leaning towards my original thoughts that I have nothing to worry about - Jees I was really freaked out earlier today.
Kmedesly - why do you think Ms is a high possiblity for me.
Marcella
 
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