Going through diagnosis... I need people to talk to...

[StuartEE]

Hello,
My name is Stuart. I'm 43 from the UK. Married with 2 young boys. (prior threads here, and here)

A few weeks ago I went to the doctors with a very sudden onset of very predominant muscle twitches over my shoulders and arms. They could have been happening longer but I went when I started really feeling them. They are very strong like being constantly poked by 10 people. I can feel up to a dozen in a second.

The doctor said my left leg muscle was smaller and I've got hyperreflex in that leg too.

I have been to see a Neurologist and had a MRI scan last week. I have a follow up in a few days. The neurologist also noted my left shoulder muscle was smaller and have sustained ankle clonus in my left foot. My CK level was 900, but I've been trying to do squats and pulluos everyday, so that may cause the slight elevation. I think I read somewhere they tend to expect CK over 1000.

My left leg hasn't been right for years, I'd say more than 5. It felt heavy like i was wearing a really heavy boot. It felt like I couldn't put my foot on the ground correctly or i was swinging my leg out out when walking. I've actually had twitching in my calf before about 5-7 years ago and had the muscle test back then and it was clear. The twitches slowly went over the next year or so.

4 years ago I had physio on my right leg and he noticed my leg leg was smaller and weaker.

I didn't mention this to my neurologist who said that is strange, if it is MND, you don't get leg atrophy for 5 years and still be strong enough to play sports.

I have never fallen because of my leg and I have walked 12+ miles in a day without issue. At no point did my left leg feel tired.

The neurologist did the things asking to resist him moving my arms and legs and my notes said there's no perceive weakness.

However now I'm more worried about my mouth and throat. I've noticed my swallowing isn't right. 99% of the time I can swallow with little issue. It just doesn't feel as strong and feels like the food is going down slowly. However really small flakes of food I struggle to swallow. Things like a couple of grains of rice, a pea or the last few crumbs of potato chips I struggle to swallow. Twice in a month it seems a small part went up my nose when I swallowed.

I also feel hoarse and raspy when I talk. My wife said she hasn't noticed it but I can feel it. Do you know when you strain to sing high notes, my throat feels like that when I talk. The more I talk the worse it feels, but resting for 30 mins and it feels and sounds much better.

I also think I'm slurring my words, especially anything ending in "s". Its feels like i cant get the shape of my tongue right or move it quickly between certain sounds. It almost feels like I have a forked tongue. I have looked in the mirror and noticed a narrow trench / dent line going down the middle of my tongue. I'm sure that wasn't there before. It goes to the end of my tongue.

Again my wife says she doesn't think I'm slurring my words.

The twitches are now most of my body including my face.

I am very worried. There is something going on and I'm fearing the worse.

My neurologist asked about tingling hands and feet and I said no. I was thinking tingling like when you sit on the toilet too long. But thinking about it, if I'm driving for a while 30+ mins, I do get a burning sensation in my neck and pin prick sensation in my shoulders and arms. Similar if I'm sat at my desk with my arms elevated.

Similar, right now. Lying in bed with my head proped up slightly on my pillow and I'm getting random pin prick sensations in my face, hands and legs.

I'm trying to stay positive. The muscle issues can have several causes but the tongue, voice and swallowing issues are really worrying me.

I just wanted to post this as I feel lonely. I do have family and friends but I don't want to worry them with every thought in my head.

Thank you for reading.

Stuart

P.S. I read the "Read this first" post in this section and found it very informative and quite helpful.

 

[lgelb]

Hi, Stuart,
First off, your wife knows/feels how you speak and if she isn't worried, I wouldn't be.
Second, pinpricks and burning are not typical of ALS onset but can mean a variety of treatable things, often something to do with your spine or positioning, or even an old mattress or chair.
Third, longstanding localized atrophy suggests an old injury but usually not much else. And most of us have a smaller/weaker leg/arm, some more pronounced than others.
Fourth, as you will have read, widespread twitching argues against ALS and is usually benign.
Fifth, your mind loves to play tricks and the stress of the above can easily make you more conscious of swallowing, and can dry out your mouth so it's harder to get things down.
A furrow in your tongue is also better appreciated when your mouth is dry or you are staring at it.
You might benefit from physio on your left leg/foot, when all is said and done. Problems with gait can worsen over time if not addressed.

It sounds your neurologist is on the case, and you'll have more information soon, but meanwhile I wouldn't waste a moment thinking about ALS. Stay hydrated and try drinking before, during, and after you eat, without rushing or worrying about it.

Best,
Laurie

 

[Bestfriends14]

Seven years and 3.5 months worrying about a disease you never have, and do not now, evidence. Man, what a waste of precious life. If I were you, I'd worry more about why you can't let go of fearing this disease when you've been told countless times you don't have it. Just my opinion.

Good luck to you.

 

[StuartEE]

Thank you for replying, Laurie.

I have been forcing myself to eat. I dont feel hungry but i make myself eat something. Occasionally realised I've drank nothing all day. So you have give some good advice.

I'm close near tears reading your reply.

It's hard to see the nuggets of positivity through the fog of doubt. Thank you for shining your light on the positive aspects.

One more question if anyone us happy to answer. The really strong muscle twitches which are easily felt, do they usually go when taking a hot bath?

I find when I have periods of lots of strong twitching they completely go when I have a hot bath. I can still see small ones happening and I'd say at a reduced rate, but the large uncomfortable ones practically stop.

 

[StuartEE]

Seven years and 3.5 months worrying about a disease you never have, and do not now, evidence. Man, what a waste of precious life. If I were you, I'd worry more about why you can't let go of fearing this disease when you've been told countless times you don't have it. Just my opinion.

Good luck to you.

I haven't been worried about ALS for 7 years. I had an EMG about 7 years ago after getting muscle cramps and twitches after a year long mystery illness that manifested in many symptoms. I think I'm was a make sure process from my Dr.

The feeling in the leg hadn't bothered me as its never caused any trouble.

My worries have only been the past 2 months now. But I do get your point.

Thank you,

Stuart

 

[lgelb]

A hot bath relaxes the muscles and its efficacy in reducing large twitches again argues against the twitches signaling disease since if they were neuropathic, that would be less likely -- you could consider therapeutic stretching/massage. And of course as you point out, a sporadic diet/liquid intake likely is not nourishing them as well as could be.

 

[MJT]

People with ALS don't notice their twitching. Others notice it and tell them about it. Look it up.

 

[StuartEE]

People with ALS don't notice their twitching. Others notice it and tell them about it. Look it up.

I have read its usually other people usually first notice the twitching but later on they can be felt. I could have had twitches before I noticed them.

 

[Bestfriends14]

Dude, you don't have ALS. Not now, and not nearly a decade ago.

I honestly wish you the best in moving past this unfounded fear; life is way too short.

 

[fjay]

People with ALS don't notice their twitching. Others notice it and tell them about it. Look it up.

Exactly what I've seen - the person with ALS who I cared for had the twitches pointed out by a neurologist, while being diagnosed - and when already dependent on a wheelchair. Had not noticed or been bothered by the twitches at all prior to this.

 

[SteveO]

I must be sensitive to the twitches; I have felt/had them since the very first symptom which was Wartenburg's sign on my left hand 4 years ago in April.

 

[KimT]

Twitches were the first thing I noticed. They were isolated on the bottom of my left foot. I just ignored them. Then my left foot started having cramps when I was swimming laps. The next thing I knew, the twitches moved up my lower leg into my thigh. Again, they were very localized. I ignored them for about six months. By then they were in my right foot and right thigh, along with wicked cramping in both feet and thighs.

I'm only reporting my own experiences with twitches.

As everyone can knows, most twitches are benign but as for noticing them, it's different with everyone.

It reminds me of when I had PVCs (extra beats in the lower heart chambers). My cardio said some people don't even notice them. For me, they felt like someone was hitting my chest. The doctor said it was because I was thin. Now I weigh 137 but I can still feel them.

 

[Bestfriends14]

Noticing or not noticing twitches (my husband did not until many years of having ALS), the OP has been unrealistically fearing ALS for over 7 years. So, in his case, whether he can feel them or not is moot; it's not relevant to ALS.

 

[StuartEE]

Twitches were the first thing I noticed. They were isolated on the bottom of my left foot. I just ignored them. Then my left foot started having cramps when I was swimming laps. The next thing I knew, the twitches moved up my lower leg into my thigh. Again, they were very localized. I ignored them for about six months. By then they were in my right foot and right thigh, along with wicked cramping in both feet and thighs.

I'm only reporting my own experiences with twitches.

Did you remember if the twitches you could feel stopped with a hot bath? Knowing the nature of what the twitches are I would presume it should have no difference.

 

[StuartEE]

Noticing or not noticing twitches (my husband did not until many years of having ALS), the OP has been unrealistically fearing ALS for over 7 years. So, in his case, whether he can feel them or not is moot; it's not relevant to ALS.

Hello, I've not been in fear for ALS for 7 years. I mentioned it as 7 years ago I had a year long period of several tests for symptoms like chest pains, breathing issues, headaches, weight loss, random pains, pins and needles and then muscle cramps and twitching. One of the tests was an EMG which I told by the person doing the test it's clean.

I mentioned it to be a positive in my situation, that I've got a history of muscle twitching in my legs which ended up being not serious.

The thing frightening me is my swallowing difficulties and speech issues. I have discovered certain phrases which I physically cannot say anymore. That coupled with a lot stronger twitching elsewhere on my body is getting me worried. I wasnt worried about ALS until a few maybe 2 months ago when I noticed my swallowing had changed and then seemingly sudden onset of the twitching.

Like all worried people, probably looked at things way too much and over analysing everything. No family member can open any bottle or jar because I'm putting them on so tight to prove to myself everything is fine.

What a medical article lists and what people experience doesn't always match. This is why I ask what may seem silly questions. Ive read articles which says ALS twitches dont usually twitch around the eye. Then i find forum posts saying they do.

I'm trying to hold on to the positives until I know more.

Thank you for your reply I do appreciate the positivity you are sending my way.