Terrified this might be ALS

[horevo]

Hi all,

I have been having some very scary symptoms lately and I am looking for some input. I am a 27 year old female in over all healthy condition. Over the past three months I have been experiencing body wide muscle twitches that seem to be mostly contained in my right calf and quad and my left tricep, but I have had them everywhere. I started feeling these twitches in October, but then they got worse. I started to have them every day almost 30 times an hour all over my body. Of course my fear is that this could be ALS. I saw a neuroligist in Nov. and had an EMG done of both my legs which came back normal. In December I began to feel like my right leg was weak, but I have seen no visible muscle wasting or atrophy and it has not given out on me or anything. Late in December all of my symptoms subsided for about two weeks but then two weeks ago they all came back just as strong if not a bit stronger. My right leg now feels weak, specifically in my quads, but again there is no visible wasting or deformity. I had another EMG done on Christmas eve and it too came back normal. My leg muscles feel empty, like right after an intense workout. I seem to be fatigued more often than not. Also, I feel like it is difficult to swallow my saliva, even though I dont have any tongue atrophy or slurring of my speach.
I am to see an ALS specialist in three weeks,but in the meantime my anxiety is getting the best of me. I feel weak in my right leg.... daily and I feel like I can't swallow my saliva... sometimes my left tricep feels a little weak also... Does this sound like it might be ALS? Can it start in this manner?

 

[BethU]

None of us are doctors here, but it doesn't sound at all like ALS. Having a random bunch of symptoms, none of which are actual weakness, all over your body is the opposite of how ALS works.

ALS is muscle weakness, period. You don't get "feelings" of being weak, you get actual, honest-to-God weakness. It's not fatique, it wouldn't appear in both bulbar (head) AND limbs at the same time, as your swallowing "feelings" and your "weak feeling" right leg indicate you have. It starts EITHER in limbs or bulbar, not both. You wouldn't have atrophy BEFORE weakness. It comes after.

It sounds like you've been reading a grab-bag of Google articles, picking out a random collection of unconnected ALS symptoms, and your anxiety has taken over. ALS DOES NOT START OUT LIKE THIS. Your EMGs are clean. See your ALS specialist for more reassurance if you want, but also, please talk to a doctor about your anxiety.

 

[horevo]

Beth
Thank you for your reply... it is a little reassuring. I have spoken with my doctor about my anxiety and I am working on that. I am still not sure what is going on here and I still fear that this could be ALS.

Can ALS start with muscle twitches even if the EMG's came out normal? Could I have done them too soon? Does bulbar onset start with difficulty swallowing saliva and a weird feeling in the back of the throat? How would I know if I had true weakness in my leg? It sometimes begins to shake when I'm standing or doing some other activities. I still feel weird and weak in my leg and I still have the twitches all over. Is there a way to test weakness?

Thanks for all your help and all your advice.
horevo

 

[horevo]

I forgot to mention the swallowing difficulty seems to get worse by my speech is not affected. My throat feels kind of scratchy when I talk.

 

[katmomma]

horevo -

I too am 27 yr old female and I have very similar symptoms as you to, that all started in June of 09. The body wide twitching, i get them everywhere all time time, phlegm in throat, scratchy voice, etc. I also had 2 neg emg's one at the end of june and one at the beginning of august done on both arms and both legs..nothing was done on my tongue or face though. I know what youre going through...I just had my second baby a month ago and was hoping that all my symptoms were pregnancy related, but they are getting worse if anything. Hang in there, your negative emg's are a very good thing and should help forget about als. PM me if you want to talk more.

Katina

 

[horevo]

Thanks Katina,

Yeah, I feel like I am in Limbo here, trying to figure out what is going on. I have had all sorts of tests and everything keeps coming back normal so I don't know what to think anyomre. I have been going to physical therapy and yesterday noticed that my right leg is weaker than my left leg. It seems to be more easily fatigued, even though I can still do all the things I can with my left. It has not given out on me or anything and there is no apparent muscle wasting as my muscles are still very tight and strong.. I am also having dull cramps and stiffness in my calf. My throat feels the same way still like it is hard to swallow and lots of dry phlegm that I can't clear our. I am still afraid these might be early ALS symptoms. I still have twitches all over.... in fact that's how all of this started. I had a two week period where my symptoms seemed to disappear and now they are all back again for the past three weeks. I fear maybe the EMGs were done too soon... is that possible? I wake up in the morning hoping to feel better but it doesn't seem to be the case. Can anyone tell me if ALS can start like this? What else should I be asking my Neuro? What other tests can I possibly do? Any suggestions?

 

[Zaphoon]

You asked if ALS could start with muscle twitches even if the EMG is clean. From all of the reading I've done on the subject, it is very, very rare that the EMG would be clean if twitches are pathological in nature. I guess the machine or operator could error but in any event, I'd trust the EMG results, especially if they are good!

Zaphoon

 

[horevo]

Thanks for your reply Zaphoon,

Do you or anyone have any other idea what I should be looking for? Is there a particular set of questions or tests you think I should ask my neurologist about?

Katina, I was thinking maybe you should talk to your neuro about Myasthenia Gravis. I read somewhere that it often comes out or gets worse after pregnancy. Just a thought. I thik I will ask my neuro about that also.
horevo

 

[horevo]

Hi again,

I am still sitting here trying to figure out what is going on with my body. I am still having body-wide twitching. In addition to that I feel that my right leg is becoming weak. I have been having issues with this leg from the beginning. My right calf has an increase in muscle tone and my right quad becomes very easily fatigued. I have noticed that although I can stand on each leg individually, both flat, and on my heals and toes, I find that I am struggling to keep my balance on my right leg and I lose my footing. What I believe is the weakest part of my right leg is the area around my knee. I feel as if my knee is unstable and hyperextends back when I walk. I have noticed in myself that I favor my left leg and often times feel that I try to compensate for my right leg. I am not sure what is going on and I am wondering if this could be ALS. I have not fallen or tripped over my foot or anything like that and I still have two clean EMG's behind me, one in my legs last November and one in my legs and arms on Xmas Eve, but I am afraid that they happened too soon. My neuroligist thinks that I have BFS, but I was wondering if anyone with BFS has had similar symptoms and if leg weakness can happen with this. I have been having these problems with my right leg for over a month and a half and I still don't have any real answers. I was referred to an ALS specialist which I am seeing next week but in the meantime I am still very nervous and can't seem to get this out of my head. Does anyone have any input? Could these be early ALS symptoms? I know I've posted before, but I guess I'm looking for some reassurance again. My heart goes out to all of you that are dealing with this disease. You truly are strong individuals and I will be supportive of this cause as I feel strongly about it. I am hoping for a cure and will try to do my part to help find out.

 

[paleshia]

hang in there, herevo. try to rest and relax. you have an appointment next week. no reason to fret too soon. hold on to those clean emg's.

 

[AndyDJX]

Hi Horevo--

Sounds much more like BFS than ALS that's for sure. Nothing is 100% and you're not going to hear that there is absolutely no chance that it's ALS, but the fact that you're young, you don't have super obvious-clinical muscle weakness, and you have clean EMGs makes it very, very, very, very unlikely that you have ALS. If you can live happily with those odds, you'll be fine.

Anxiety can absolutely cause the speech problems your describing. Not "make you think you're having speech problems" but actually cause them.

The BFS boards are filled with people who have muscular problems, exercise fatigue, etc. You might be surprised how common twitching+muscle problems are, and there aren't always clear answers from docs about what causes it. But with clean EMGs under your belt, I would scratch ALS off your list of considerations unless something drastically changes.

 

[abcde]

I have had BFS like symptons for about 7yrs. (Twitching,cramping,spasms,etc) Still undiagnosed, but i do not have any weakness. In the beginning i often thought that parts of my body were weaker than they were before. However under periods of intense anxiety, your mind has a great opportunity to imagine weakness is there, when it actually isn't. I spent hours looking at my right and left biceps for example and i noticed that my right bicep was 3/4 inch less than my left. This did'nt mean i had loss any muscle mass, it just meant that it was just naturally smaller. But i was convinced it was weaker. Muscle fatigue is very common in BFS.

 

[horevo]

Thanks guys, you have all been very helpful in comforting me. I will meet with the specialist in a week from Thursday and hopefully that will help alleviate my stresses. I feel like I do have muscle weakness. my right leg feels significantly different than my left when I walk and often times I feel like I am favoring my left just to not bear my weight on my right leg. When I bend my leg up and down at the knee my quad shakes drastically. My quad is significantly shakey, even when I walk. I know my right leg is smaller than my left so I try not to assume that I have muscle wasting since my whole right side is smaller than my left. However, I feel like this is weakness in my quad. Also, I feel as if my hip pops out as I walk. Could these be early ALS symptoms? I don't really know what to think anymore. I am holding on to those clean EMG's for now and trying to assume the best. Some days I falter and think that I have ALS and just need some reassurance.... I'm sure we've all been there. Other days I convince myself that I'm fine and try to just live my life. This hit me really hard three months ago and I found myself very depressed and anxious. I wasn't sleeping or eating well. Then I just decided that whatever this is shouldn't stop me from living because we all have a certain amount of time on this Earth and we should make the most of it. Sometimes though I have times of weakness and my thoughts go back to ALS. This is a great resource and I am thankful to have people like all of you supporting me. My thoughts and prayers are will all of you battling this disease and with those of you undiagnosed like me. I pray that you find the strength to keep fighting and live long, happy, and healthy lives.
Kate

 

[horevo]

Hi again,
Ok, so I have my ALS specialist appointment tomorrow. I am still terrified. I have had weakness in my right leg and it doesn't seem to let up at all. I haven't fallen or anything like that, but my leg is definitely weaker and shakier... Also, most of my twitches are in that leg. I am wondering how ALS weakness first starts? Could you feel the difference in both legs as you walked? I do.... Does it just happen and then one day you can't stand on your leg? Any insight?

 

[halfin]

Good luck with your ALS specialist appointment tomorrow! He will evaluate your leg strength and probably your other muscles as well. He has experience with what ALS looks like and how its weakness shows up. Please listen to what he says and don't assume that you know more than he does about ALS. I hope you get good news, and that you are able to take it to heart and calm your anxious feelings.