Please help, I'm so worried I have ALS

[WorriedMe]

Hi everyone, I am a 30 year old woman and I have been having a host of very scary symptoms. When I googled them they led me to ALS. I have been reading up on this illness and am incredibly petrified that I have it. I'm going to go through my symptoms for you guys, please let me know what you think. God, I'm so scared.

I have had twitching for many many years. I think I can remember it even when I was 23. These twitches have remained constant. But these aren't the symptoms that are scaring me. I have noticed that my left hand feels weaker and at times it feels as though I can't clench my fist hard. I have also noticed a general weakness in my left arm at times. At other times I have noticed a weakness in my left leg. I have had a few times at night where I was laying down and it felt as if my throat had forgotten how to swallow. I don't get this all the time. I also don't get the hand weakness all the time. It comes and goes. A year ago I started going to the gym and found that I could not do the curl machine very well. Upon closer examination I find it very difficult to do a curl with my left arm. I can do a curl with my right. I am right handed. I have since stopped going to the gym (not because of these symptoms). The symptom that scares me alot is it feels as though my lungs are weak. I first noticed this last summer (2008). It seemed to come only when I was really tired at night. It kind of felt like when you are at the tail end of a cold. I was not congested and did not have a cold. Well what is scaring me is it feels as if this has progressed lately. When before I only felt this occasionally I now have this feeling all the time in my lungs. Like I can't breath out without having to give a little cough. Again I have no congestion and am not sick with a cold. It just feels like a weakness of the lungs. I also don't have allergies or a history of asthma, nor do I smoke. It also feels as if the muscles in my face feel weak like at times it feels like I have to give a slight effort to smile. I also am currently experiencing alot of cramping and stiffness in my legs and arms.

I also experience a lot of pain in my neck, it is constantly stiff and sore. At times it's worse and I have very little mobility of my neck.

I have had an MRI of my brain for another issue (head pressure and shooting pains into head when doing a leg press at the gym) about 8 months ago. It came back clean. I haven't yet had an EMG and have just made an appointment with my doctor so that I can talk to her about all of this. I have never told her about the sysmptoms I am experiencing. They were all so subtle that it wasn't alarming before, although it has been in the back of my mind for the past year and a half. Because I'm experiencing alot symptoms at once and the feeling in my lungs has gotten worse in the past 2 weeks I am now thinking that I may have a serious problem. What do you guys think? I'm going crazy over here. I know that something is wrong, but does this sound like ALS? I'm so scared...please help!

 

[Moonmark]

Hi, Worried,

sorry you are having these worrisome problems, but you mention that these things are happening "all at once," which, from what I have been able to glean on this forum, is not typical of ALS. The people with ALS here report symptoms that evolved over time, not all at once. so take some reassurance from that. There are also a lot of other less serious conditions and diseases that can cause muscle weakness, twitching, cramping, etc. Your primary care doctor will probably refer you to a neurologist who can conduct an EMG, evaluate you for neurological problems, and hopefully rule out ALS.

For what it's worth, I have an eight-month or more (not sure exactly when things started) history of off-and-on muscle twitching, limb weakness (primarily in hands and arms and one shoulder), some mild atrophy, off-and-on excessive saliva in my mouth and two neurologists do not think I have ALS at this time, although I will be followed in three-month intervals. I do not have an answer yet for my problems, so it may take a while for you to get some answers, but hopefully you will have something they can figure out sooner rather than later.

you should also be reassured that ALS is a rare disease, and even rarer in someone your age, particularly women your age. While it is certainly not impossible to have ALS at your age, the risk increases after age 40. I believe most people are diagnosed between age 40 and 70, from what I have read.

While I know it is hard to do, you should do your best to relax and not freak out while you await tests and such. It will only make things worse, believe me.

Hang in there--

Sandra

 

[WorriedMe]

Thanks so much for replying Sandra. What you have to say is very encouraging and helpful. I have been reading countless posts and there are many people that are very worried and baffled by their symptoms. It seems as though mine are all at once right now but the progression really has been gradual if I think of each symptom individually. I know that I can't know anything until I have been seen by a neuro and have an EMG. It's just so nerve wracking and I start to think of all the worst case scenarios. Because noone I know that is my age has any symptoms like this and it feels so strange and I often feel as though my body is older then it is. Like it is the body of an elderly person. Thanks so much...this board is awesome and I have alot of admiration for those coping with these illnesses.

 

[BethU]

Hi, WorriedMe ... this doesn't sound like ALS onset to me, but I agree with you that you should talk to your doctor about this.

The breathing issue would concern me most, if it were me, but make a list of the other symptoms, too. As I said, it doesn't sound like ALS, but, as a non-smoker, you shouldn't be having lung problems at your age.

Hopefully, it will be something treatable. Good luck! Let us know what your doctor says.

 

[WorriedMe]

I tried to do one girl style push-up today and I couldn't even do one. Whereas before, when I was very out of shape (before I attempted to go back to the gym), I could do at least a few regular push-ups and now I can't even do one girl-style push-up. I'm just so weak in my arms. It's just so strange. I used to have very strong arms. This is worrisome to me.

 

[WorriedMe]

Thanks for replying Beth. It's encouraging to hear from people that it doesn't sound like it's ALS. I hope that's what any future tests say as well. Either way something weird is happening in my body that has gotten me worried. I agree the lung thing has me most worried. That's what got me Googling. And then in conjunction with my other symptoms it lead me here. Thanks again for your input! I'm going to keep my fingers crossed and pray that this all turns out well and they find out what's causing my symptoms! I will update you on anything as it comes. This board is very helpful. Thanks so much.

 

[abcde]

You said that your neck is very stiff and painful. Have you ever had any massage therapy in this area? If your arms and legs also feel stiff, you may have a trapped nerve in your neck, that is also causing problems elsewhere.

 

[Danijela]

Hi,

In ALS the weakness does not come and go. When it comes, it stays and gets progressively worse, until all or most of the movement is diminished (through a combination of weakness, atrophy and paralysis). I hope you get to the bottom of your condition, but I doubt very much it is ALS. Dani

 

[Moonmark]

Hi Dani-- and anyone else who cares to respond--

I realize that in people with ALS, the muscle weakness does not come and go. But I am wondering if the twitching does come and go in PALS or once it starts, it pretty much does not stop until the muscles no longer work.

I have muscle weakness and pain that is not going away, among other problems, but I have twitching that comes and goes and sometimes is gone for long periods of time before it resurfaces. For example, for much of the summer, I had twitching around my lips and in my chin, but that has disappeared. I thought I was free of twitching, but this week it has flared up again-- some flickers in my right arm yesterday, and today, a few flickers in my stomach. They do not bother me so much as trouble my mind.

I had a negative EMG in June and have seen two neuros, both specialists in ALS, who said no ALS "at this time." The first neuro said he could not completely rule out a neuro condition, however (what it might be, he would not speculate) and the second said he would like to see me again in three months, which I will probably do because I liked him a lot better than the first, and the hospital is a major medical center in Boston, Mass. At times I feel reassured by the negative EMG in June and "no ALS" opinions and other times I am not so sure and wonder if I am in the early stages of something yet to be diagnosed. Especially because both docs seemed to be keeping the possibilities open by saying "at this time."

anyway, today I am just wondering about the pattern of twitches-- do the PALS here experience twitches that come and go, or stick around once they make an appearance. I know I probably should be more worried about the muscle weakness and other symptoms-- and I am-- but for some reason, it's the twitching that brings my mind back to ALS.


thanks--

Sandra

 

[rose]

Sandra,

It should help you to remember that your doctors look at the big picture, subtleties you exhibit to them that you are not aware of, and they don't comment on.

This is just my opinion (however, I do speak from my own experience) I think if either neuro was truly considering a motor neuron disease as one of your differential diagnoses, they would have been ordering more diagnostic testing to be done in the interim between your scheduled appointments.

Re: twitching, I've never been very twitchy, I may have them where I can't see them, so I'm not aware, but the ones I do see or can feel, vary in how many there are, (fatigue and stress makes them worse) but no, once they start, they never go completely away. If your twitches are due to a nerve irritation (which can be a cause) then perhaps whatever is causing the irritation settles down, and then flares back up. Have autoimmune causes been explored and ruled out for you? ~ As an aside, I don't see how anything autoimmune could have been ruled out, that can take months to even years ... anyway, absolutely keep your next appointment.

You are right to realize that its not the twitching that should be a concern, but rather weakness, or other infringements on your functioning in life as the "you" your family and friends know (and love) Try to look at it as a puzzle, and each time you are seen by your specialist, and with the passing of time, more pieces should fit together. Good luck!

 

[Danijela]

Hi Sandra,

for my partner once the twitching started it had never gone away. When I cuddle next to him I can feel it all over his body, some of it is barely noticeable and I would probably not give it a second thought had I not been told that it can be a symptom of ALS. As Rose pointed out, stress and anxiety make it worse. I have seen my partner upset and enraged and he told me that the twitches were quite strong at those times. Dani

 

[Zaphoon]

Regarding breathing:

I value breathing as a very important exercise (you may even say, vital exercise). I have found that when I stop breathing, things have a tendency to go into crisis mode. So, consequently, this is not something I stop doing for very long (unless I'm underwater).

I'm not concerned with any of your symptoms other than the no breathing one. This alone would be enough of a motivator to seek out a doctor that could render help and give answers.

Good luck with getting things fixed very soon!

Zaphoon

 

[GlenBrittle]

Hi Worried ,

Since you are in Ottawa , where I go , if your doctor needs to refer you for the EMG , have her refer you to Dr. Peter Bourque.

Glen

 

[WorriedMe]

@ Dani, thanks for replying. The more input I get from everyone, the better I am feeling. Yes the weakness does come and go, sometimes worse and sometimes alot better. Yesterday for example it was bad. I tried to do a push-up and could not even do one. I could easily do push-ups previously so I'm not understanding what is going on. It doesn't feel mechanical (i.e. a shoulder problem) it feels like it is my actual muscles being weaker.

@abcd Yes I have tried massage and the stiffness and soreness persists! It is now chronic and I'm not sure what it is. I think I need an MRI of my spine.

@Zaphoon lol I like how you put that. Yes, the breathing was what initially got me very alarmed and I am definitely getting testing for this as well. I'm going to get an EMG to rule this out and ease my mind. But you all have helped in that department so much! I also wanted to say that being on this board, I have seen some very strong and courageous people that help others while at the same time facing this awful disease. And I just wanted to say thankyou.

@ Glenn...thanks so much I will get my doctor to refer me to him! PS I used to live in Hawkesbury years ago so we may know some of the same people?

 

[Kevinski]

Try to relax and not worry and dont borrow trouble.See your neurologist,and go ftom there an emg is the only test that will trll you you have als .I have bulnar onset diagnosed ingrew up in montreal and live oisife Calgary ,have a brother and sister im ottawa.And I am so thankfull for the medical system we have in this country especially when you get sick ,you get taken care of without financially getting ruined .take care and good luck. kevin from calgary