Help really worried

[rich1872]

I am worried sick , I have 3 young children and I'm terrified I have ALS and not going to be here for them , both my calves are fasculating furiously 24/7 , I try to tense the muscle in my left calf and it shrinks into itself my brain is telling it to tense but it just fades away it seems much smaller and feels weaker too my full left side feels weak leg and arm , my bones are cracking all the time , and I am getting random twitches all over my body , my fingers feel very stiff too , the calf fasculations are really non stop and large fasculations , I am so worried I have ALS and won't see my children grow any help would be so much appreciated thank you so much .

 

[ShiftKicker]

ALS is indicated by a whole spectrum of symptoms, not just twitching- please read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

You would need to visit with your doctor in order to have a clinical exam and speak with them about your fears and symptoms. This would be your first step before assuming a terminal disease! Twitching is SO common as to indicate nothing unless accompanied by a variety of other issues only a doctor can really observe.

We do get so many people through here who look up twitching on Google and assume the worst despite not showing other real signs of ALS- Dr Google causes unwarranted anxiety over benign and normal happenings in the body. A full exam by your doctor should reassure you and provide you with more information about what might be the issue.

All the best

 

[rich1872]

Shiftkicker thank you so much for taking the time to reply to me I really appreciate it as I am so worried, I am 37 years old and I have spoken to my GP who has referred me to a neurologist I am worried sick about it, the twitches aren't small theu are really bad and are 24 7 it is not just the twitches that worry me it is the way I cannot flex my muscle properly and it fades away as I am trying to tense it , I think it is muscle atrophy and it has consumed my life , thank you so much again for taking time to reply to me I really appreciate it I just feel so scared as I have to wait for a neurology appointment .

 

[lgelb]

Widespread twitching and perceived weakness points away from ALS. While you await your appointment, I would take stock of your diet, hydration and exercises that lengthen the muscles.

Best,
Laurie

 

[rich1872]

My fasculations are in my calves which are 24 7 and really bad I have taken a video of them and they are actually worse than anything I have seen on you tube etc , my left calf where the twitching began a few months ago clearly has less muscle now and when sitting still i can see them twitching furiously, I am now convinced this must be ALS due to the clear muscle atrophy as well , I am genuinely terrified it has now totally consumed my life please with anyones experience is there any possible explanation for these fasculations and muscle shrinking that is not ALS or should I be prepared for the worse , my full family is now really worried sick and any help advice at all would be greatly appreciated thank you all .

 

[lgelb]

I cannot remember anyone with ALS with calf onset, whether with real or imagined atrophy and/or fascics, and with fully functional legs (your efforts to test them notwithstanding). Even if your muscles are shrinking, there are many reasons besides ALS such as disuse, viruses, injuries.

Fascics do not mean anything in themselves no matter how fierce they seem. The feeling of not being able to tense them (if that were literally true, you couldn't walk) could easily be an electrolyte imbalance (try some bananas, oranges, etc.) or again, a virus. It's winter so it needn't be Covid.

Try the No More Panic site for some perspective that we are not equipped to provide here. Definitely don't look at twitching vids on YT!

 

[rich1872]

Thanks for your reply I really appreciate you taking the time for me , yes its a cold winter here in scotland however I have been having the fasculations on my left calf since summer and that is the calf where there is clear muscle loss and I am unable to tense it , and I now have them 24 7 on both calves, I've noticed the calf sort of vibrating vigirously as well when i raise it which is compounding my fears, also regarding the electrolyte imbalance I have been tested for that with a blood test and my blood came back OK for magnesium sodium etc , I have got myself and my family worried into a frenzy that with the furious fasculations and the clear muscle loss there is no other explanation than this terrible illness, I cant thank you guys enough for your response as I am currently terrified of not being here for my young children thank you for any more advice you can give ?

 

[lgelb]

Blood tests for electrolytes are not necessarily definitive, so it's worth tinkering with your diet a bit.

Almost all the myriad possible reasons for fascics and your perception of muscle loss are more common and benign than ALS.

So your statement that "there is no other explanation" is 100% wrong.

 

[Bestfriends14]

Doesn't sound a smidge like ALS. I concur with Laurie in that your sentiments about having this disease are 100% wrong. Full stop.

Please continue to work with your docs, but it isn't here to find the answers you are looking for.

Best of luck to you and please stay safe.

 

[rich1872]

I cant thank you enough for taking time to reply to me I am worried sick at the moment , Laurie what you are doing to help people with your knowledge is amazing, I accept that I am wrong in saying there is no other explanation I am just so worried and I feel as if the symptoms are pointing towards ALS , I have tried tinkering with my diet and eating lots of fruit in the last couple of months and that hasn't helped , all my symptoms so far wether they are related or not I don't know
# the calf fasculations which are really fierce 24 hours a day
# unable to tense muscle in left calf and clear loss of muscle in that calf
# loss of muscle in left arm , right is much bigger
# I have developed pulsate tinitus where I hear constant whooshing ringing and a heartbeat in my ears ( don't know if this is just separate issue ) and can hear a sort of crackling sound inside head, behind nose when lying in bed again think this could be separate problem
# feeling really tired and weak
# random twitches in arms , bum , quads when lying in bed not constant just random

The main fear in the calves area which is really furious fasculations 24/7 and the muscle loss that is what is terrifying me i could have MND i know you say im wrong in saying there is no other explanation and I fully accept that and thank you for that but with these symptoms in your opinion does it sound like it ALS to you guys ?
With the pandemic I am struggling to get a hospital appointment and I am so scared and worried at the moment it has totally taken over my life , I thank you so much for taking the time out to help and advise me it means so much thank you

 

[lgelb]

Tinnitus can relate to excess ear wax, worth asking your GP to check, or you can try drops on your own.
The rest we have covered. We have all said that we do not see ALS in this. There is no point in your continuing to ask the same question, as our answer will not change.

If you can get a counseling appointment to discuss your fears while awaiting the neurology appointment, I am sure that would be all to the good and help you gain perspective.

 

[rich1872]

Thank you Laurie for taking time for me again I really do appreciate it so much , the tinitus is getting worse and the gp saw no excess ear wax that is why I mentioned it , I know you are saying not ALS so thank you so much for giving me some sort of reassurance I just thought that the major fasculations and atrophy i am experiencing was a classic symptom hence the reason I have been so scared as has my family , another thing I meant to ask which may not be related either is that I have been waking up in the middle of the night with my hands and arms completely numb and takes 5 minutes for the sensation to come back again , thank you once again for all your help and correspondence it is really kind thanks

 

[ShiftKicker]

Hi Rich-
Laurie has already provided you with some excellent feedback and several recommendations. Once the folk here state it doesn't sound like ALS, it's really important to use your closer medical resources to continue your search and get the help you need. It's particularly excellent advice she's given you re: getting a counseling appointment while you wait for your neuro appointment. They can give you the extra support you need while you wait. If you're still needing to seek medical advice, an ALS forum is probably not the best place for it- your doctor or the counselor is your best bet.

Let us know how your neuro appointment goes. Make sure you are prepared and have your questions organized and written down ahead of time so you don't feel like you've missed something you'd like addressed. Let the neuro direct the appointment and by all means, ask questions but don't make them spend your appointment trying to convince you you don't have ALS- that can draw the focus and take time better spent telling you what issues there really are.

All the best

 

[rich1872]

Shift kicker, I really do appreciate the advice given to me by yourself and Laurie and cannot thank you enough for your time, what can I say i am really just scared shitless here and have nowhere to turn , the NHS is under immense pressure here at the moment so I cannot see a neuro right now never mind a counseller, to say I am worried would be an understatement, I know you guys are saying this isn't ALS and I pray to God above it isn't its not the twitching that worries me so much its the clear muscle loss I have in my lower limb that is frightening me do you honestly think with all your guys experience that does not sound like ALS? It is not imagined atrophy i can see and feel it as can my partner and parents who have looked , I currently sit here worried sick about not being here for my very young kids growing up and it is horrible , like I says before I have been waking up through the night every night with my arms and fingers numb as well maybe this is related maybe its not I don't know, but the fasculations in the leg and atrophy are frightening and with no appointments now in the near future you guys help and advice with your experience really does mean the world to me. I am not meaning to pester you in any way shape or form but if you really believe this doesn't sound like ALS then I thank you and at least will have some sort of peace in my mind while I try and wait to be assessed by a medical professional, I have also been having some issues where I feel as if something is stuck in my throat all the time but I accept that this could maybe be put down to the anxiety and worry of the fasculations and atrophy in my lower leg , thank you once again for everything and God bless . Rich

 

[ShiftKicker]

Rich, what I see in the wall of text above that appears to be a single run-on sentence, is straight up panic and you need to deal with that immediately. If you can't see a doctor or counselor or speak with someone by phone, please visit the No More Panic forums, where there are many resources, including peer support more appropriate than asking folks on an ALS forum to provide this.

I am wondering what you think the folk here can do for you exactly. We've provided you the feedback that you don't seem to show the pattern of symptoms seen in ALS. We've given you a few different recommendations and ideas about what things might be and how to mitigate some of it. We've recommended you access a counselor because you are clearly struggling and also asked you not to post til after your appointment. At this time, instead of repeating, I ask that you read your thread again carefully.

Please, no more posting til after your appointment. I recommend you stay away from this forum completely, as remaining here only serves to increase your anxiety.