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VWPGSY

Member
Joined
Oct 19, 2014
Messages
25
Reason
Lost a loved one
Country
UK
State
Avon
City
Bristol
Hi everyone

My Dad passed away in August 2014 from MND/ALS - 2 days prior to my wedding.

Since then, aside from the sadness and grief of missing my beloved father, I have TOTALLY consumed by fear that I was experiencing ALS symptoms - weakness, twitching, buzzing, slurring muscle stiffness, atrophy - every part of my body, sometimes very localised, sometimes not.

My "symptoms" were very real, they were not imaginary. They were constant. When I woke up, all day long, and when I went to sleep.

After almost a year, several different neuro visits, an EMG etc, I have begun to realise that I do not have ALS (touchwood!). I have been told too many times, by people on forums (such as this one) and by doctors that it is very unlikely I have anything other than anxiety and simple twitching (benign).

Many people twitch, buzz, have weakness etc, but very often (practically most of the time) it's not ALS. My chances of getting it are only marginally higher than someone without a parent who had it - i.e. it's a rare illness.

I can only begin to describe the stress it's put me through, and all for nothing.

Life is so short and precious, if you've been told you have nothing to worry about, then please don't consume yourselves with the illness. I know it's hard not to think about it all the time, but you should try very hard not to.

I still buzz and twitch now and may have another neuro check up in the future, but I cannot justify worrying all the time any more and implore others who felt like me to do the same - try and enjoy each and every day - a technique called "mindfulness" helped me a lot and staying off Dr. Google has helped a lot.

Simply ignoring your worries and symptoms is hard at first, but after a while, it becomes easy.

For those that have the illness, spend a thought for them, pray for them, but do not consume yourself with anxiety from perceived "symptoms" you have, that 99% of the time, are not ALS.

Good luck to those who are worried and if I can help you, please feel free to direct message you. I am in the UK by the way.
 
Thanks, VWGPSY. We have a lot of visitors who need that message. --Mike
 
Thanks Mike, and thanks for your support on this forum when I reached out last year when in deep, dark anxiety territory.
 
Great post! I wish there was a way for people to connect outside this forum. The counsel/benefit would be so great for so many. I feel like I am you but only 3 months in. Hopefully due to folks like Mike, Nikki and yourself it doesn't take a year to realize I'm ok. Mind plays weird tricks on us!
 
Thanks Rounder78, when I was in deep, dark anxiety territory (with real "symptoms"), reading posts like the one I wrote above did not make me feel much better, so am pleased it helps, even slightly.

The people who have been kind to me on this forum (e.g. Mike, Nikki etc.) - I've felt a strange closeness and connection to them, it's hard to explain - but they have truly helped me, with just a few words of encouragement and wisdom when I reached out when in a state of fear and anxiety.

I still have fear about ALS, but no more than I fear being struck down with any other illness, but it's a "healthy fear" if that makes sense - something I don't dwell on every second of the day.

Yes, it would not be good to get ALS, but do not worry about it constantly, let it make me lose sleep, lose focus at work etc.

As my late and great Dad said when he was in the latter days of his illness "what will be, will be". He was so measured, I miss him with all my heart as am sure many people who have lost a loved one to anything, not just ALS, can appreciate.

For example, I have been twitching today, had weird cramps, etc. - but I just ignore it, I've been told it's nothing to worry about too many times, by too many knowledgeable people to warrant worrying about it (as many have said on here previously, read the STICKIES)

Time is a reasonably good healer for worrying i.e. the longer "symptoms" go on for without worsening, but I wish I'd manage to get over my fears/anxiety at 3 months, rather than 12 months, which is what I've just about managed to do.

Like my Dad said to me across the dinner table a month before he passed when I was clearly upset about his condition, "it's life" (referring to battling his illness) - "just make sure you enjoy your own" - I would be doing my Dad a disservice if I worried about something I had been told I do not have.

For those worried, I beg you to see a PCP/Neurologist and once you've hopefully been told you have little to worry about, you must move on. You owe it to yourself.
 
I completely agree with you. That's why I asked if there was a way to connect with the likes of Mike or Nikki outside of the forum. As Mike said in my post, people who have true symptoms don't start on the blogs/Internet, they go to the doctor because they can't suddenly pick up a coffee cup. My two visits, I think my doctors thought I was crazy and I was hoping they'd tell me that! Amazingly enough, my "focus" of my symptoms have changed from twitching to this burning sensation in my calf into my little toe. Twitching has almost stopped (as much as I notice) but I have the burn, which anyone on here will tell you burning/tingling/pain point AWAY from ALS. So it's almost like I'm trying my brain to create less serious symptoms. My point, I think it's all in my head. Now I am sure there will be good days and bad days, but I still circle back to my post, the stickies, posts like this and essentially any post by Mike/Nikki for reassurance. I've got bigger fish to fry (my mom, my 22 month old, my wife, my family) to let this own me.

One thing I will ask about your experience with you dad. Obviously that time will come with my mom, advice on preparing? I'm not sure how you mentally prepare for it but for who have been thru it, any comments would be great.
 
rounder hon don't hijack this thread please - it had a specific topic
 
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