Need some honest advice

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sam3030

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hi

I'm 39 year old male and suffer from significant health anxiety . approx a couple of month ago I started getting issues with the following:

1- twitching on left side of body 24/7 very fine twitching that feel like spider crawling on my legs.
2- twitching more prominent on my right calf and foot again non stop but also occurs randomly all over including my eyes .
3- internal vibrations specially during the night . it feels like im shaking on the inside and sometimes wakes me up . it comes in waves ... vibrate for a minute then pause then vibrate again etc...
4- this is what has really got me concerned . I noticed my right calf slightly smaller than my left . I also noticed I have very brisk reflexes on my right knee than me left
5- I went trying to prove to myself I have no issue (which is how I usually deal with health anxiety) by excercing.i tried to do calf raises raises . I managed about 30 on the left leg and 15-20 on my right which felt weaker than left . oddly enough it wasn't sore the next day like my left leg was
6-ive got constant ringing in my ears !

saw a neurologist who confirmed the brisk reflexes on the right but didn't seem too phased and said it could be caused by anything . he acknowledged the difference in size between right and left but said it wasn't significant enough yet to concern him .we did an MRI of the head which was unremarkable. he suggested of I really want I could do an emg as a next step but wasn't insisting on it
he said it's up to me .his thoughts were it's unlikely to be anything significant .

so needless to say with the one side hyper reflexes , twitching on that side and reduced muscle size I cannot get Al's put of my head . the fact that the muscle isn't getting sore after leg raises in my anxious mind is also making me thinking maybe it's not working correctly and hence why it's shrinking . my dilemma and where I need advise is whether I should go ahead with an emg . if I get an anolomy on it it will really screw with my head ! given the symptoms above would you recommend I risk it and go for the emg ?

thanks
 

sam3030

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I just came back from a second neurologist for another opinion. this one thinks my reflexes are normal.they r slightly more brisk into the right than the left by but said they are not significantly different . he did admit there is subtle difference in calf size between the left and right but strength is still intact. because of my tinnitis and feeling of crawling insects on my leg he is thinking some kind of peripheral neuropathy . he also thinks something system is happing because of the fatigue as well . going back for blood tests again . I explained to him how after excercise one calf get sore and the other one doesn't ( the one that is getting smaller ) he said he has no explanation for it . I highly suggested the emg so I guess I'm gonna go ahead with it . I'm really freaking out now . the whole calf size issue and lack of soreness after excercise has really got me concerned . can anyone please chime and let me know if this is the classic way Als presents ? do you lose clinical weakness and atrophy or atrophy the lose weakness ?
 

lgelb

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No clinical weakness, two neurologists with no concerns, but obviously it's going to take an EMG to convince you, so go for it. Which calf gets sore, etc. has nothing to do with ALS. You are talking yourself into a tizzy for no reason and evidently your health anxiety is not being adequately treated. Ringing in the ears could be tinnitus and often relates to medications that you may be taking, or hyperawareness of your heart/surroundings. Your twitching is probably all the worse for lack of refreshing sleep and anxiety.

Find better help for your emotional state, and you will be able to recapture the insight that there is nothing to worry about relative to ALS.

Best,
Laurie
 

sam3030

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thank you for the reply . I'm due for an emg in 7 days. it's probably my anxious mind but it just keeps going around in loops . I cannot understand how my calf's and feet twitch 24/7 for month on end without some serious nerve disease . is that illogical ? also the buzzing down my legs and the constant feeling of vibrations/internal tremours through the night is that not a sign of some kind of motor neuron disease ? sorry for the dumb questions I have read the sticky and understand sensation isn't typically a part of als. is that true for the vast majority of people ? I'm going around measuring my calfs at the moment and my wife thinks I've gone nuts (she flat out said it ) but my mind keeps telling me how can I have these symptoms contiously even on days I'm not stressed or anxious without some physical motor nerve abnormality . I'm sorry to keep harping on but I guess I'm sick one way or the other (mental or otherwise ) and trying my best to get some perspective on the situation. My mother died a couple of years back from a gliblastoma so I have some understanding(small as it may be) of what people here are going through specially from a care taker point of view . I'd appreciate any help and insight to help me get through the next 7 days and beyond whatever that may bring . could this all really be anxiety driven ? do people just twitch persistently for month on end 24/7 without any further issues ?

thanks
 

lgelb

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I understand what you are saying, but yes, it is entirely possible. Read through other threads in this section if you are not convinced. 99.5% of these stories come to nothing at all.

You could ask your doc about screening for restless leg syndrome (RLS) if the movement is worse when you are still and better when you move, especially at night. There are drugs that help that.

It is not only anxiety-driven (though anxiety doesn't help). Benign fasciculation syndrome, if that's what you have, or part of it, is a real phenomenon and it's not clear why it comes to pass, as with so many other conditions we don't fully understand yet. But the key word is "benign."

So think of it as you started twitching for some reason and anxiety, maybe poor sleep, maybe pandemic stress, maybe not the best diet or stretching regimen or whatever, ramped it up. Or all of these things. And then when you keep focusing on it...it gets worse.

100% true that ALS is a disease of motor neurons, not sensory neurons. Buzzing most often arises from fatigue, anxiety, dehydration and/or an unbalanced diet. I would really consider a massage with a therapist who has a neuromuscular focus, if it can be done safely wherever you are. Self-massage can be helpful as well.

These are all things to consider, but the best prescription, ultimately, is to live your life as if none of this was going on, and see how far that takes you. When your mind is restless, it can negatively affect your body, always, so part of that "live your life" thing is making sure that you have enough passions and pastimes to occupy it more productively.
 

sam3030

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thank you for the wise words . ill try and keep my mind occupied during the day and I usually can . I think for me nights is the worst . when things happen during the day U can think about it and put some perspective on it . nights is a different story . I'm up at the moment 4 am now and my right side of my body is tremoring ... I can't see it but if I put my hand on my right leg it's vibrating like there's a mobile cell in it ! what the hell do I make of that ! im almost in tears !
 

ShiftKicker

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Sam, it's important you find someone to help you with your stress levels. It's clear you are anxious about this and it is affecting your day to day life, so please seek support from your doctor, a counselor or an online anxiety group. Your questions have been answered to the best of this forum's ability and there's not much more people here can add. As well, you have been cleared of ALS by specialists, so it's time to start moving past your fear of ALS and seek support from folk elsewhere more equipped to help you.
 

sam3030

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apologies if I stepped over any lines with both yourself and igelb. I'm doing my best to keep it together till I have this emg on sat. thank you for the private message btw . There was some good resources there. I'll come back and end this thread with the emg results whatever they may end up being .

thank you
 

sam3030

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just got back from my NCS and emg . all clean from what the operator told me . he did my entire right side including my hands and said no abnormality found for both the emg and NCS. I got him to also do my lower extremities of the other side just for my reassurance .... also clean . I'm even more convinced this is my head playing with me . I left walking out thinking did I miss understand him... am I sure he said it's all clean . this is how troubled my mind is working at the moment . I went back up asking for the hard copy so I keep referring to it when I go back into my rabbit hole of Als. funny thing is my.leg was twitching everywhere except the bit where he had the needle in so he couldn't pick up any tiwches even though he could see it . he said it doesn't matter there are other things they look for and they were normal . further to this for anyone wanting to do this test I found it not painfull or distressing in the least despite what I read on the net . it was odd but not painfull.... as for the twitching I asked what Is causing it then to which he responded this is like asking why do we exist ! he said who knows and don't worry about it . he suggested I put it out of my mind for 6 month and see how I go . if anything changes he said to go back but he doesn't expect to see me again .

thank you again for all your support . I think after all this testing I might still have a little momey left over for a physiologist ! which may be money better spent !
 

lgelb

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No doubt. Thanks for reporting back, which helps others, and you are right, that hard copy is a good thing to have. Put it on your mirror if you have to. Life is a great gift-- take full advantage.

Best,
Laurie
 

sam3030

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sorry to bug you guys again.... so moving on I still have these weird symptoms described above and am trying to figure out how to resolve them . all my tests are coming back normal so I'm not too concerned it's als anymore . I've been thinking back trying to figure out when they started .... I'm not sure of this is coincidental but I had a heart MRI with contrast about 3 weeks before symptoms started . I have read a little about contrast toxicity but I'm not sure if this is also as rare as Als and I'm barking up the wrong tree or whether this is a real thing that could happen even after one MRI ? I'm sure a lot of you have been through MRIs has anyone come across this before ? I'm just trying to figure out if there is a cause that I could potentially fix . the twitching and tremors/vibrations are keeping me awake and the brain fog is keeping me from working . again I realise this is an als forum but I'm not sure where else to ask the question and my GP didn't even seem to know what contrast they use with mris ! is there any blood tests that I can ask for to rule this out ?
 

Nikki J

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It would usually be a gadolinium scan. Gadolinium toxicity can happen though with one scan would be rare if you have good kidneys. In the US the procedure report would say what was used. Your doctor could call and check if it doesn’t. We did have someone here whose issue was found to be gadolinium toxicity though I don’t remember her symptoms.

initial screening is usually a 24 hour urine.

good luck
 

sam3030

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thank you . I just spoke to the MRI place . They used a solution called GADOVIST which is some kind of gadolinium solution . it's a long shot but I'll see if my gp is willing to test for it .

thanks again
 

sam3030

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So i came back from my neurologist . Tests for heavy metal came back negative . Mri of spine came back normal. I have attached his report plus my emg results . I have a couple of questioms as this particular neurologist doesnt reallt specialise in meuromuscular issues althought i was fairly happy with him over all

1- has my emg been done in sufficient place to catagorically rule out als ? Please not this was done on my symptomatic side where i had the twitches and weakness.

2- the constant mention of hyper reflexes in his clinical report ... can i forgot those completely and call it an incidental finding effectively ? He had no good answer for me really when i asked . He said its possible they are just normal but they are not pathalogical .

3- with the mentiom of very brisk reflexes is his report still considered a nornal clinical report ?

4- i asked him if he was sure this is not als . He said yes unless something changes and we should review in 4 wreeks. Does this mean he may have doubts or he is just covering himself ?

5- has anyome used that particular anti depressant that he notes towards the end and found that it helps calm down the cns ?
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Sorry for the bombardment of questions i just want to close off this chapter in my life and move on.
 

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Of course the EMG was done in enough places. They know where to test and it isn't always where an untrained person expects.

Lots of people have abnormal stuff happen, but not pathological means it isn't a disease process. Benign is another term often used.

The anti depressant is to help you cope with your situation, not to treat the physical symptoms I would imagine, but hey you could ask all of these things of your doctor. It is more appropriate for the doctor to answer these things, rather than us trying to guess exactly what or why anything on the report.

You don't get any better result than this, nor any clearer answer from your neurologist. You do NOT have ALS - celebrate! Please stay safe, VIC is really doing it tough just now. You don't have any symptoms to warrant taking up the time of a neuromuscular specialist. On top of that, just now - they need to be in contact with as few people as possible as the PALS they are treating are extremely high risk.

Take care and follow up with your doctors mate.
 
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