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hawkid

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I have some very puzzling and scary symptoms and was hoping I would be able to get some advice as to my best course of action from here.

Background:
I am a 36 year old male. I am very active and in good shape. I played rugby for several years but now focus on triathlon. I also lift weights in the gym 3 times per week.

Symptoms:
For 2 months now, I have had progressive weakness in my left arm. Initially I noticed my hand shaking, then I noticed the muscles in my forearm were quivering when trying to hold my arm out and use my hand. The arm got progressively weaker and then the twitching started, just a few twitches at first but now constant 24/7 twitching of many muscles in my forearm and bicep. The arm feels very weak now and I have lost significant muscle in my forearm. If I tense my forearm now it generally locks out or cramps. I can still do most things - apart from lift heavy weights in the gym, but there is an overwhelming feeling of weakness and fatigue in the arm.
At the same time the twitching started in my left arm, I began twitching in other parts of my body. My calves twitch like mad (I have always had this after exercise but not constantly), my feet twitch underneath, I get twitches in my hands and randomly on my upper body and thighs. However, there is no feeling of weakness or fatigue in my legs, hands or feet.
For 2 months now I have also suffered from cramping. Particularly in my right foot where I have previously had plantar fasciitus - but it seems that any muscle in my body is prone to a cramp if put under tension.
Most worryingly, over the last week I have felt progressively weaker in my right arm. There is no significant muscle loss at this stage but there are a few twitches, especially at night. Driving, for example, is now becoming an issue as both arms feel very fatigued quite quickly. Also holding a mobile phone to my ear for more than 5 minutes is an issue.

Steps to Diagnosis so far:
I saw a neurologist last week (before my right arm started getting weak). He performed all of the standard tests and concluded that he was 99% certain my twitching was benign. I raised the issue of weakness and muscle loss in my left arm and he attributed it to soreness from cramping and said my left arm will naturally be smaller than my right. I was not convinced so he agreed to refer me for EMG and NCS.
I had the EMG and NCS yesterday and got a 'clean' result. The only issue with the NCS was an slight inconsistency around my right ankle but the neurophysiologist attributed this to the 2 operations I have had on that ankle. With the EMG, she tested my calves, which were fine (apart from fasciculations) and then went straight to my left forearm. She tested 4 different sites in my forearm where the twitching and weakness is at it's worst and found nothing sinister. No other areas were tested, which concerns me slightly. I should have at least asked her to test my right foot, where I get twitching and the most cramping. She recommended I get a scan on my neck to look for a compressed nerve. She also suggested that this would be a very uncommon way for ALS to present itself. She said that it would normally start in the smaller muscles in a hand for example, rather than the forearm itself.

Next Steps:
I have another appointment with my neurologist next week to discuss the results and the next steps. At this point I am truly in shock that the EMG was clean on my left forearm. I was totally convinced I had ALS and it would show up. A compressed nerve seems like a nice solution but surely this is unlikely considering the problem appears to be in both arms?

Questions:
1 - Given the information above, should I still be concerned that this could be ALS?
2 - If not ALS, then what else could this be?
3 - Should I look for a second opinion on the EMG - maybe to ensure that more muscles are tested?

Any thoughts or advice would be most welcome.
Thanks
 
You don't have ALS, nor do you have any reason to suspect ALS.
Your neurologist did the right things and came to the right conclusion, in my humble opinion. You should follow her advice and concentrate on a possible pinched nerve or compressed disk.
I think a second EMG would be a waste. Trust your doctor.

I won't venture to guess what else it could be, because I'm not a doctor and can't diagnose you. Nut I know ALS fairly well and you didn't describe it at all.

Twitches are very common as we get older. Healthy people twitch. Twitches are common and have common causes. Don't worry about twitches.

A clean EMG means no ALS. Congratulations on that.
 
Thanks Atsugi for your reassuring words.
I really want to believe that I do not have ALS. But I am a logical person who searches for answers. I understand that twitching can be benign and a clean EMG indicates no ALS but I am really struggling to understand why I would have weakness in both arms and muscle loss alongside the twitching. You say that what I describe does not sound like ALS - but surely muscle twitching, muscle weakness and muscle loss are absolutely things that sound like ALS? Am I missing something?
I know there must be hundreds of people posting on here who truly believe they have ALS when they don't but it is so scary when you get these symptoms that seemingly cannot be explained by anything else...
Thanks again for your help. I know you must get fed up with being asked the same questions over again...
 
Atsugi is so good about reading through long posts and giving his very knowledgeable opinion, and no one here is going to give you another one. Seriously, trust your doctor--it sounds like you are on track to continue looking for an answer, so let go of this ALS fear. We are not doctors and will leave the diagnosis to your highly trained physician. All we can tell you is that you are among the fortunate many who don't belong here. If we had any doubts about that we would tell you. I hope you find an answer soon and that you stop reading about ALS.
 
"surely muscle twitching, muscle weakness and muscle loss are absolutely things that sound like ALS?
Am I missing something?"

Yep. You're overlooking about 262 other possible conditions that are not ALS and not fatal.

You're also missing the logical connection between a clean EMG and no ALS. In order for nerve damage in the brain to cause weakness in the extremities, there must be a problem in the nerves from the brain to the muscles. This must always show up on EMG. It's like: how can you have a broken leg without a break in the leg?

Your symptoms must be caused by something else. Don't waste time looking into ALS, which is already ruled out.
 
1) No. But having any/all your muscles cramp under tension suggests if nothing else that you reconsider your diet, sleep and pre-lift/activity stretching regimens. I'd also find a hot tub and massage therapist, and check out tai chi.
2) Several possibilities, including garden-variety overtaxed muscles. Too little info to make WAGs.
3) You don't need a 2nd opinion on a negative EMG, nor another one. The recommendation to have your spine imaged seems very logical. You think you have a bilateral problem but what you may have is one arm compensating for the other, esp. since you lift.
4) I understand that you are "truly in shock" about the test results, but there is no reason not to proceed as your neuro suggests. Until you get scanned, I would limit your lifting to what you consider baby weights in case you do have any spinal issue. All the best.
 
Thank you all for you responses. Sorry to keep hassling you - but there has been some development and I am now even more worriesd...

To update, I saw my neurologist 2 days ago. As expected, he ruled out ALS immediately based on the EMG. He also ruled out compressed nerve and MS etc based on my symptoms as a whole. He is sticking with his diagnosis of Benign Cramp Fasciculation Syndrome (BCFS) and has given me tablets for 2 months. If I don't get better he wants me to see his colleague who is a neuromuscular specialist. This did not sit too well with me as there was still no logical explanation for the weakness in my arms and the muscle loss so I arranged to see the specialist today. Unfortunately his outlook was not so promising. He said that I definitely have peripheral nerve hyper excitability - which can be attributed to one of two things - BCFS or motor neurone disease. He said that with my symptoms, especially the weakness and muscle loss, he cannot rule out the possibility of ALS. There were no issues identified in his clinical examination today but he suggested it would be difficult to identify at this stage because I still have some strength in my arms, albeit less strength than usual. He also said that it is possible that the EMG would not have picked up the issue - as in his words 'it is a small needle sampling only a few muscles, so if the disease is not yet widespread it could be missed'. He has suggested that I see him monthly to check on the progress of my symptoms and said the only way we can be sure is to see what happens over time. He suggested that I should know for sure within 3-6 months and has recommended another EMG in a couple of months.

To be honest, this scares the hell out of me! I know now that I will be worried about every ache and pain I get being a sign of weakness and atrophy. Over the last couple of days I have started to feel discomfort in my left pectoral, along with the soreness and weakness in my arms. I have also felt some tingling sensations over my throat and my neck has been stiff. I just can't see how all of this could be due to BCFS. It seems like I am just waiting for this to get bad enough for the doctors to be able to determine that I have clinical weakness and definite atrophy.

So what do I do now? I know I need to try to stay positive and get on with life assuming I don't have ALS - but how is it possible to do that? Do you have any advice for me?

Thanks again...
 
Discomfort soreness stiff neck tingling don't sound like ALS they sound like stress which is understandable.
Where did the comment about hyperexcitability come from? Based on something on the EMG which you were told was fine? To say it is bcfs or mnd without a ton of tests to rule out things that people here who had grossly abnormal EMGs and clinical exams went through before getting a diagnosis seems very strange. So does an EMGs as soon as 2 months. 6 is common 3 happens once in a while. If this guy is truly a neuromuscular specialist sounds like there is a piece missing to what you know or at least what you shared.

How do you deal? The same way everyone does. Make the best of each day. Really. There are people who are here and people who are former members who had a couple of years before the picture became clear
 
Thanks Nikki.
From the clinical examination, he observed all of the muscle twitching all over my body and concluded that this could be categorised as peripheral nerve hyperexcitability. He said this was not in doubt, but the doubt is in what has caused it.
I can assure that I have shared everything I thought was important but for clarity here is a full list of current symptoms....
- Widespread muscle twitching, some random but some constant and focussed mainly on left arm
- Significant discomfort, weakness and some muscle loss in left arm - burning/numb sensation in forearm and muscles lock and shake when I engage them
- twitching in left hand and muscle around the thumb visibly smaller then right hand
- Feelings of weakness, burning/numb sensation in right arm, with a few twitches but no apparent muscle loss yet
- Frequent muscle twitching and cramping (especially at night) in right foot
- Lots of twitching in calves
- Widespread body cramping - if I engage any muscle for a few seconds it will generally cramp up
- Discomfort in left pectoral as well as a dent which looks to me like atrophy
- Stiff neck and tingling feelings around neck

I am aware that anxiety can cause some of these symptoms and I have been very worried about all of this - but I was not anxious before I started to get the symptoms in my left arm. So I am positive that these are real symptoms and not a result of my anxiety.
 
Did either of the neurologists see atrophy? In my experience they can see it at a glance. I meant your new complaints sounded stress induced.

If your EMG was normal and your clinical exam was too bcfs sound infinitely more likely. If you visit the bfs boards you will see hosts of stories of people madly twitching all over and still fine after years. But time will give you the answer. Time spent worrying now is surely wasted. If you did by some chance have MND you are never going to be as well as you are this minute so better enjoy it. If you don't have MND which seems likely the worry is definitely wasted. There is nothing you can do right now to change any of this and you have to wait for your appointment. The wait will be easier if you fill it with wonderful moments. Honestly. We have all been there and spending time having fun helps. For the record I will be surprised is this turns into MND but your doctor presumably knows his stuff so apparently it is not impossible
 
Thank you for the reassurance.
The neurologist today noted that there was visible difference between my left forearm and my right but I guess it takes time to be sure of atrophy. I know for sure that I have lost muscle in that arm. I have no doubt about that....

I will try to be positive and enjoy life as you suggest :)
 
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