do i have als?! please help!

[chopper27]

hi all, this is my very first post and while im writing it i am very emotional. i recently discovered twitching that started off in my claves, this was about 12 weeks ago now, two weeks into these symtoms the twitching moved into other areas of my body, thighs, bum, arms, chin, nose, i became terriefied and went to see my gp, who wasnt interested and just said it was probably benign fasciculations. however in the time since i have had twitching in my right thumb, and it became very painfull, im pretty sure there has been muscle wastage that has followed and now my left thumb has been affected, im having really excrutiating pain and shooting pains in my thumb area. im pretty sure the fatty area of the thumb has lost muscle mass, my grip for now is good and no muscle weakness as of yet. another symptom is feeling really tired all the time, which is unusual for me as i have always been active. i can feel my entire body pulse when im lying on my back and trying to relax although the anxiaty is killing me. ive decided to go private and see a Neurologist and have an appointment this tuesday. im a 27 year old male and im finding this very difficult to deal with, i cant stop thinking about it. is there any hope that someone can give me as to something else that it could be or is als the obvious?! thanks to all who read and reply, very scared.

 

[affected]

Calm down honey, you don't describe anything that sounds like ALS.

Read the sticky at the top of the forum, stay off the internet and this forum, and see the neurologist and believe what they say. We are not doctors, but we know heaps about ALS. So it's obvious that it is NOT what you are experiencing. Please don't reply by trying to tell us more symptoms to convince us.

After the neurologist you may need some help with anxiety I would think.

All the best in solving your issues.

 

[chopper27]

hi tillie i would just like to say a massive thank you for taking some time out to respond to my post. i understand that everyone should read the sticky at the top of the forum and believe me i did, i just feel very alone in what im going through and although i have people supporting me i just feel like im on the verge of a breakdown over this. im so worried that something which started with visable calf twitching 12 weeks ago is now transferred to really painfull hands mainly thumbs and what looks like muscle wastage. the calf twitching is non stop although it sometimes feels like its calmed, its always there, and the twitching that i was feeling in other areas has clamed and now seems to be in my legs and hands/arms mainly. there is something definatly not right and the thought of als is very much on my mind. once again tillie thank you so much for your response any more info you can share or knowledge i would be so gratefull. you dont know how much your response means to me.

 

[Nuts]

Chopper27, Tillie is one of our most knowledgeable and active forum members. Believe me, you are not going to get anyone else here, at least anyone who is dealing with diagnosed ALS, to give you a different answer. Because this disease makes any effort very difficult (some of our members can't even use their hands, they type with eye recognition software which is very time consuming) you should not keep adding symptoms and asking more people to weigh in. Our members have invested a great deal of time and energy in creating the stickies so that they don't have to keep typiing the same responses over and over. You should be relieved by what Tillie wrote and you should respect her request that you not return with more symptoms. This is not an anxiety forum. If you can't convince yourself that you don't have ALS, please find an anxiety forum and only return here if a qualified MND specialist tells you you have ALS.

 

[chopper27]

hey nuts yeah i fully understand your response and dont want to affend anyone. its the last thing im on here to do. i was just looking for support and advice of others who were potentially going through/ been through what im experiencing. i am so gratefull to tillie for her response and anyone who else makes comments, including yourself! if i do end up having als i will do my very best to pass on my experiences if i am able to. everyone on this site is great and its a good source of valuable info. many thanks.

 

[Kosmoskatten]

ALS does not start generally start with body-wide twitching, it starts localized and progresses. At your age chances are at an absolute minimum to get ALS.

Check your fluid intake, and calm down. Anxiety heightens existing symptoms and can also cause both twitching and fatigue.

This does not sound like ALS at all.

 

[chopper27]

thanks kosmoskatten i do appreciate you taking time to respond, yeah i thought the all over body twitching might be a signal of something else as most of the information i have read states that als usually doesnt twitch all over, however these all over body twitches have virtually stopped and are pretty much in my claves and legs. my main concern has to be my hands and mainly the base of the thumb on the palm, this seems to have gotten much flatter and is very painfull. i feel like they are constantly burning and at times when i flatten out my hands they are red raw with white spots all over. im pretty sure i can see muscle wastage and the area between the thumb and forefinger seems like there is alot of loose skin. im terrified my grip is going to go any minute its a real worry. i just dont understand something that starts with calf twitching and is now in my hands which is causing alot of pain and discomfort, im really sorry for causing anyone inconvienece but i just cant see anything else it being. i hope the odds are in my favour but tell that to the people who have been diagnosed with als im sure they were told the same thing! thanks to all who take time and respond. any suggestions on what else it could be would be gratefull. i do appreciate every comment. even the kick up the backside ones. many thanks

 

[scorpian223]

Chopper,

As a 27 year old who is experiencing plenty of the same issues as you are, I feel your pain. The good thing is that you are feeling pain, so that points away from ALS. My symptoms of twitching and perceived weakness began in mid-September this year - my left arm was getting fatigued faster and i felt like the bicep muscle was shrinking and getting "softer". It got to the point where I was just investigating my body, trying to convince myself of atrophy, yet it wasn't/isn't.

If you are like me, you will not be able to put this to bed until you are told "you don't have ALS" so what I suggest is seeing a neurologist and voicing your concerns. My first neuro diagnosed me with carpal tunnel, which was then laughed at by my GP and second neuro. That being said, I do have loss of muscle in my thumb that I could notice, so I continued investigation. My second neuro gladly agreed to give me an EMG, which ended coming back normal with some benign fasics, and said "put ALS thoughts out of your mind, there is no signs of motor neuron disease at all." Since then, I have been able to rest easier and things have gotten a little better, especially in my mind, which is half the battle.

Thing is, I have twitching all over periodically throughout the day, but it by no means is constant. Couple jumps here and there. But they aren't because of ALS. The disease is already extremely rare and at our age, it makes it even more rare. After getting the normal EMG, I seeked answers through an orthopedic doctor, who took x-rays and saw some neck arthiritis that could be impinging a nerve. I got an MRI on monday and get the results back today during my follow-up.

Just schedule a neuro appointment, get a thorough clinical exam and an EMG. Otherwise, it will eat you up inside and that is no way to live. This forum provided me plenty of reality checks, so I hope it does the same for you. Best of luck.

 

[MaxEidswick]

Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum. Stop being lazy and expecting people with limited abilities or time to give you answers to questions that have already been answered.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practitioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

 

[chopper27]

thank you so much scorpion223 that post means alot to me. im glad that you have got peace of mind that you dont have mnd that is a true blessing. yeah my appointment on tuesday with the neuro specialist cant come soon enough seems so far away. i am really struggling emotionally and trying to hide the impact its having on me from my loved ones. i just keep thinking why now! i really do appreciate you taking time to post and as someone who is having similar symtoms its just nice to talk to someone about it. i hope and pray that als is not the cause but until i see the neuroligist and thats ruled out i cant help but think about it every minute of every day! like you say scorpion223 its eating. away at me. although i am interested in something that you mention, regarding a trapped nerve in the neck, i have had neck stiffness caused by burstitis and have had stiffness there for four or so years now. could a trapped nerve in the neck cause pain in both hands and be the cause of twitching in legs and body?! also could that cause muscle wastage or the muscles flattening. i know you dont have all the answers but anything that you have become aware of and any of your experiences would be ever so gratefull. i once again scorpion223 would like to thank you for your response it really does help speaking to someone in a similar situation. very kind.

 

[chopper27]

hey max again im not on here to offend anyone and i truly understand what you are saying. im taking everything on board that these kind people have said and believe me i have trawelled the internet in search of answers. i believe this to be a forum where not only people with als but also people who are fearfull of als can come together and share experiences and give each other support, i really do get what your saying and tough love is sometimes the best way, no doubt, but i do believe that that this site does provide comfort and support regardless of the outcome. for every 100,000 people that post only one or two might turn out to be als but there is no reason why that one or two could be me, you or someone else and i think its good to support each other regardless. like i say max thanks for posting and i get what your saying but this has opened up my eyes and whatever happens i will be doing alot more to support als.

 

[scorpian223]

From what I have learned, if you have neck issues, it can affect pretty much everything considering your nerves pretty much begin in your neck and branch out through your body. Slipped discs, herniated discs, neck stiffness from bursitis can all cause pain and twitching. Even if a nerve is slightly impinged, it messes up whatever limb it is attached to and gets everything out of whack. If the nerve is impinged and connects to one in your arm, like the ulnar, it can cause slight atrophy and fasciculations. For me, I experience a charlie horse sort of soreness in my arms from time to time and my hands do cramp as well. The twitching spot for me is mainly my left arm though as that is where it all began. Picking things up - pans, pots, etc - are difficult and i can see my tricep/bicep fasics when I do it, but after the EMG, I can't really be concerned about it because my neuro said they are benign.

Now, my original neuro that diagnosed me with carpal tunnel is still in the back of my mind because i do get wrist soreness and finger cramps through the day since my job, which is physically demanding in the summer, is now more so of a desk job. I have a follow-up/left arm EMG with him next week. Many have told me no point in getting a second EMG, but since it was scheduled already, I see no harm in getting a second opinion at all.

Hope that helps some. Odds are strongly against us, my friend, seriously. Anxiety is a monster and it took me over when I couldn't focus on anything else. Just get out of the house and do anything to take your mind off of it and most of all, don't google symptoms. Everytime I felt like I had a new symptom, I would twist it in a way to make it out to be ALS. We focus on "wasting and atrophy" but that doesn't occur until later according to 99% of those on here. Fact is, I don't really know what my thumb looked like before, so maybe it way always like this.

Best of luck, if you have any other questions, shoot me a message on my profile page as I do not want to further disturb those who actually have this horrendous condition.

 

[MaxEidswick]

>Best of luck, if you have any other questions, shoot me a message on my profile page as I do not want to further disturb those who actually have this horrendous condition.

Ditto that!

 

[affected]

STOP

Scorpian you need to follow my advice and move on and leave this forum, not fuel the fire for more people. Please keep off other threads, you have asked your questions and been answered by us.

Chopper you need to follow my advice also. You are creating a long thread here to no point as you do NOT HAVE ALS. You thanked me profusely for my first reply, then continued to go on and on about symptoms, so you did not actually read my post at all.

I have posted to both of you STOP COMING HERE.

I'm not offended, I don't want to read your symptoms over again, you won't convince me and this is not a place to babysit people with anxiety.

Why would you think the terminally ill want to stroke you? (rhetorical don't answer)

Go to a health anxiety forum to have people want to talk all this over with you. Go to your doctor and work to solve this in a calm manner, or to a psychiatrist if you can't calm down.

All the best