Really scared and sad

[brian2008]

I have had the twitching in the back of my left upper arm for at least a month now. In the past three weeks, it would go on constantly for three days then subside (it still occurs sporadically but most of the time doesn't) for two or three days, then come back again.

This time, it has been twitching for more than three days and I'm worried it's getting worse and may just keep going on endlessly soon.

I have noticed sporadic twitches mainly in my left calf, left thigh, left foot, left chest in the past few weeks too. They tend not to last more than a few seconds. I did have a few twitches in the right side of my body but they were much less than the the left side.

So predominately the twitching only occurs in the back of my left upper arm (localized and constant, both point to ALS?). I'm really scared and will see a neuro next week. I read many posts about the link between twitching and weakness/atrophy, and for a while was a bit relieved that I haven't felt any real weakness. Then after reading other people's stories of having fasciculation as the first sign of ALS and weakness/atrophy only follows months later, I'm now totally stressed out.

One thing differentiates my case with many people here is that I had some kind of brain surgery almost two years ago and had lumbar drainage for over a week. More reasons to worry me to death since there is supposedly a correlation between back surgery and ALS.

I'm only in my 30s and married with a small kid. Right now, I probably feel more sad than fear, sad for the fate of my family if I were gone.

Just wanted to share my story with others, can't help posting after reading so many helpful posts from others.

 

[SuzyQ]

I'm so sorry you're going through this brian. I can't offer medical advice but I can very much empathise with your sadness. I have been having symptoms of 'something' for around 6 months and as my father died of this disease I have also felt complete despair over the future well being of my two young children as I am a single parent. You will get so much support here .... when they all wake up! Actually not sure of time difference but just didn't want you to feel alone. I actually posted quite a chirpy thread earlier but believe me I have had my 'moments' over the previous months and will not doubt have many more. Hang in there and try to relax, maybe focus on something you enjoy or something you've been putting off. Have to go work now, Take Care.
Sue

 

[brian2008]

Thanks very much Sue for you reply!

I guess the only thing I can do now is prepare for the worst but live/work as normal as possible.

And maybe buy some lottos tonight.

 

[planningguy]

Brian2008,

Although you will find some stories of individuals for whom twitching was the first symptom, by and large that is not the case. From what I understand (and have read from those with ALS who post on this site), the most common initial symptoms of ALS involve progressive muscle weakness that limits physical activity.

That being said many many things can cause both twitching and muscular weakness. The vast majority of which are treatable. Muscle twitching is extremely common, and can even be caused by stress or vitamin deficiency. Unfortunately, the internet is a world of extremes, and googling "muscle twitching" will bring up an ALS site pretty quickly. You mention some damage that was caused by surgery, and perhaps there are some lingering effects and nerve irritation.

As far as the ALS surgery connection, keep in mind that it is a rare illness for which no "cause" has been established. There is a good chance that, similiar to cancer, that ALS is a disease that is dependent on a combination of genetic and environmental factors. Although surgery might speed up the process, or make people more sensitive to their symptoms, it is highly unlikely to be the cause.

I would recommend that you take a deep breath, eat well, get some good rest, and try to find something else to absorb your time. The neurologist will hopefully put your mind at ease.

Best of luck,

Robert

 

[brian2008]

Robert

Thanks a lot for your advice!

Yes, I'd better find something else to do rather than dwell on sadness and make my wife weep all the time. I'll try being as positive as I can and hope for less uncertainty after visiting the neuro next week.

 

[brian2008]

Got back from hospital

Update on my visit to the neuro.

The last episode of the twithing in the back of my left upper arm had lasted for a week, constant twiching non-stop, unitl this afternoon before I went for my appointment! It either stopped or became less strong so I couldn't feel it.

Sitting in the waiting room, I kind of hoped the twitch would come back so the neuro wouldn't think it's just my imagination. It did twitch again a few times before I went in, but completely stopped when the neuro started examining me.

With hindsight, the twitching probably stopped because I had to move my arms around while he was checking my muscels. But anyway, he failed to observe a single twitch that I told him had been there for the last 4 weeks at least.

After performing some tests including Babinski reflex, he told me it's probably the way I sit caused some damage to the nerve and he didn't even think of ALS until I asked him about it.

He completely dismissed that possibility and told me there's no muscle wasting in my arm.

I said I read about people having fasciculation as first sign and mine is very localized and constant, and I had lumbar drain after brain surgery...

He brought back his boss for a second opinion. After testing my reflexes in both arms his boss told me it should be benign, again because of the lack of any muscle wasting or weakness.

No EMG or MRI required and no other appoinment unless I develop new symptoms such as weakness or muscle wasting.

And I was told not to worry even if the twich starts again and goes on constantly for a week or a month, as long as no wasting.

I didn't ask if they are ALS specialist, though I doubt they are.

What happened immediately after I went in my wife's car was, the twitching started again, and it still twitches now I'm writing. Does this sound like a joke? I'm too depressed to laugh about it.

Yes I heard of going to the Doc too soon, but didn't think they wouldn't even let me have an EMG!

Maybe they just think if I do have ALS, it will make no difference to me to get me dignosed now or when there is real weakness or atrophy, say, a few months later.

 

[BethU]

Hi, Brian ... you said ...

After testing my reflexes in both arms his boss told me it should be benign, again because of the lack of any muscle wasting or weakness. . .

If there is no weakness or atrophy, there is no reason to test for ALS. Those are the symptoms of ALS, not twitching. Benign twitching affects a gazillion people.

Don't you consider the fact that you do not have symptoms of ALS good news? I sure would.

Take it easy,
BethU

 

[lovelily]

Hi brian.... I understand your anxiety of wanting the doctors to view your muscle movement while in the office, to prove your case. It is 'Murphey's Law' that your symptoms would disappear during your visit. It happens to many patients.

The good news is that you have no muscle weakness nor atrophy, or increased reflexes. I think this points away from 'ALS', at this time.

If the symptoms continue you can always return, or go back to you PCP for a follow up. If you have any disease process, it will not go away. Only time will tell. It could be a hundred other things. The wait is tough. Sometimes diagnosing is tougher.

I hope for the best possible outcome for you!

 

[Al]

If you have twitches that stop when you go see a doctor, they are caused by your mind. Give it some serious thought. ALS twitches don't stop. Yours do. Two docs tell you you don't have ALS. We tell you you don't have ALS. Don't become one of those people that reads more and convinces themselves they are sick. Get out of here, you're fine. Come back in 6 months and tell us how good you are. Stay out of medical sites.

AL.

 

[brian2008]

Hi, Brian ... you said ...

After testing my reflexes in both arms his boss told me it should be benign, again because of the lack of any muscle wasting or weakness. . .

If there is no weakness or atrophy, there is no reason to test for ALS. Those are the symptoms of ALS, not twitching. Benign twitching affects a gazillion people.

Don't you consider the fact that you do not have symptoms of ALS good news? I sure would.

Take it easy,
BethU

Thank you BethU for your reply!

I'm aware of weakness or atrophy being the most indicative sign for ALS, but as I read from this forum people did have atrophy following a period of fascicualtion as well.

Anyway, there is nothing I can do at the moment except trying to accept their professional judgement and adapting myself to this constant twitching companion, at the same time hoping for the worst to never come.

 

[brian2008]

If you have twitches that stop when you go see a doctor, they are caused by your mind. Give it some serious thought. ALS twitches don't stop. Yours do. Two docs tell you you don't have ALS. We tell you you don't have ALS. Don't become one of those people that reads more and convinces themselves they are sick. Get out of here, you're fine. Come back in 6 months and tell us how good you are. Stay out of medical sites.

AL.

Thanks AL.

I'm still not even 70% sure I don't or won't have ALS or any other kind of MND, but I'll try the best to relax myself, not the least because nothing else can be done now, and hope for the best.

 

[brian2008]

Hi brian.... I understand your anxiety of wanting the doctors to view your muscle movement while in the office, to prove your case. It is 'Murphey's Law' that your symptoms would disappear during your visit. It happens to many patients.

The good news is that you have no muscle weakness nor atrophy, or increased reflexes. I think this points away from 'ALS', at this time.

If the symptoms continue you can always return, or go back to you PCP for a follow up. If you have any disease process, it will not go away. Only time will tell. It could be a hundred other things. The wait is tough. Sometimes diagnosing is tougher.

I hope for the best possible outcome for you!

Thank you lovelily,

You are right only time will tell. At least I've had both my wife and my own mind ready for the worst scenario (easy said than done but we'll try our best).

 

[SuzyQ]

Hello Brian,

I have purely come on site tonight to reply to a private message then saw your post. Please believe the neuro's and members on here and switch off to terminal illness. I am waiting diagnosis and like yourself began to read everything about MND until that was all I could think about. I had to seriously question why I was being so morbid and exactly what I was acheiving. I am not saying you or I do or don't have this hideous illness, for now we haven't. Please for yours and your wife's sake live like you haven't, if your time was up tomorrow what kind of memories would they be left with. That's how I try and look at it.

Take really good care

Sue