Very worried. Twitching & pain is continuing

[Adamski1]

Hi all.

I'm looking for some reassurance and also need to vent my concerns somewhere.
I posted previously about twitch and cramping for 2 months. My issues howevere started in May with general malaise and chest pain.
So I'm now two and a half months in to twitching. It can affect me anywhere but is persistent throughout my left calf and scary ones in my face and now neck. The calf twitches are like bubbling under the skin. I can't always see them but certainly feel them. The twitches in my face are very light quick pulses, sometimes they make my face itch. Both eyes are affected at different times. I keep waking up in the night with large pulsating twitches in my shoulders or stomach whilst also still able to feel them in my calves (mainly left). I have severe leg pain / burning / cramping (mainly in calves) every time I am sitting down, this is affecting both legs in the same way. This is continuos ever time I sit and disappears when standing. This pain has been going on for two months now.
My concerns are not only the twitching and leg pain for over 2 months but two things I hadn't even associated with it all previously. They are joints cracking, and I mean every joint cracking, all the time. Wrists, elbows, shoulders, neck, knees etc. The other concern is waking up in the night with numb arms and fingers. This affects both arms from the elbow down to the ring and little fingers. This I understand is quite concerning with the fact I am worrying about als.
I can't get this worry out of my head. The world is passing me by and I'm to busy reading symptoms for this, that and the other. I can't stop thinking about what might happen to my wife and children should it be worse case scenario.
I saw my gp at the beginning of this week who I had seen a month earlier regarding all these issues (I have had so many gp visits in the last few months for general aches and pains). A month ago he wasn't to concerned and said come back in a month to see how I was getting on. He said he would order an EMG test to put his and my mind at rest but said he is pretty certain it's is not als as I have no muscle loss or clinical weakness. At the appointment on Monday he seemed concerned I was still having issues and got me a neurologist referral there and then. It's for the 11th December. I am still waiting for the EMG ordered a month ago.
All of this is getting too much for me now. I really am struggling to cope with it all.

Any help or advice is more than welcome.
Adam.

[Canbud]

It's so stressful to have these weird symptoms that don't offer an immediate explanation, isn't it? Your mind always goes to the worst case scenario.

Does you doctor offer any hypotheses for what could be causing it? A friend of mine had similar symptoms to yours, and was diagnosed with Benign Fasciculation (sp?) Syndrome. Seems to have gone away as quickly as it came up too.

[Adamski1]

Thanks for the reply. He didn't offer any possible causes. When I went last month he told me he used to work in neurology so had seen a lot of cases of it. At that time he said he was 99% certain I didn't have als and the only reason he didn't say 100% is because no doctor should say they're certain about anything until a diagnosis. I left the appointment 1 month ago with him saying stop worrying, you don't have als.
Fast forward to my appointment on Monday and he didn't offer the same reassurance. He gave me the appointment there and then. He said he will send a letter to the neurologist and see if they can offer me any reassurance.

I don't know how I'm going to last another month with things feeling like they're getting progressively worse.

[clover1201]

I have had twitching for 9 months, very very bad twitching, everywhere! I have aching in my muscles and dr noticed weakness. I was referred to neurology, neurologist ordered nerve and motor conduction studies and emg. Nerve conduction studies came out normal, emg didnt. I dont have als, consultant neuro physoligist doing the emg seemed fairly certain of that but he did think i have muscle membrane ion chanel dysfunction. No idea what that is but he said it isnt degenerative but may get worse and various times. He doesnt know what is causing it but thinks it could be chemical or hormonal imbalances.
I have awful cramping, some days i wake up feeling like ive run a marathon, thats because my muscles are hypersentive and its also causing them to over contract, its also causing the twitching. He has referred me back to the neurologist to see where he wants to go with it.

Twitching and cramping can be caused by some may things, i was told that although stress/anxiey isnt causing mine but it will make them worse. I wouldnt stress there are so many things that cause them more than most are harmless reasons.

[Adamski1]

Thanks for the reply clover. That has put my mind a little more at rest. If nothing else it has shown me that there are other things out there that can cause these symptoms. I've never heard of that disorder before. Just shows that there's stuff out there that I haven't even considered.

Hope you are dong well now. Would you say your symptoms seem similar to mine?

[clover1201]

Not sure, the twitching i have is very very bad throughout my body, Face, tounge, legs, arms, face, bottom, chest everywhere - even in place i didnt know i had muscle that could twitch. Before the twitching started I had weakness. It was in my right leg then went to my right shoulder. The shoulder got worse but the leg stayed at the same level (and still is). The consultant told me at the time that even tough I can feel the ache and that my use is reduced because of it that it is still only a precieved weakness as I have full movement and my strength seems fine. My cramping comes and goes, also in severity. Sometime i cant barley walk as it feels like ive had an intense workout and some days its not there.
Fortunetly I have a friend who specialises in neurology ( although for peads) and she took a look at my EMG result when i got them through and said because the abnormal bits are confined to a singular group of muscles then she wouldnt be concerned. Im just going to take their word for it. That 2 consultants who have said dont let it worry you so i should listen. Howevr this being the devil that it is always keeps something at the back of my mind going. From what I have rad from your posts above, it sound fairly anxiety like. I know it sounds wierd but I just knew that mine wasnt, it was too intense and the weakness (percieved or not) was just to great.
I really wouldnt worry, the emg is very straight forward (pretty scary to see the stuff on screen as one always thinks what they are seeing is abnormal) and it is very accurate. Its picks up the most sensitive of stuff. The other thing with ALS is that the twitching only happens after real weakness, by which point its fairly obvious whats going on and an emg would show wasting and the muscles dying. Please dont worry!