31 year old male with a father who had MND

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LambBhunna

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So around two months ago, 4 september. I just got back from holiday and I had a stomach virus and. The stomach virus was causing constant diarrhea. And around this time we also moved into a new house, so I was no longer working from my current work from my work desk I was working from a sofa my posture was terrible.

Now I had. Around this time also start again pins and needles in. My hands. Which I know is not a symptom of als.however, it would come when I would use my phone too much, my screen time is around 8 hours per day, and I don't exactly sit in the best posture.

Around this time also, also, I started getting muscle twitching in my legs and calves only just calves. And this would only this would only happen when I was lying down or sitting in a chair, I didn't get woken up, it wasn't affecting my sleep, and it was. quite infrequent, Since then, with physio therapy and private physio. My neck had cleared up. And my hands weren't causing me any issues. Except from if I was on my phone for too long.

The issue I do have, however, is the twitching in my calfs has not gone. It has now been over two Months. And, I Do. Not, Understand why the twitching has not left, I do not have clinical weakness, and I do not feel I. Have, atrophy, Because Even though I feel like my left leg is slightly small on my right. Even though I am left leg, I think this may be due to anxiety. And finding differences. When there is not a massive difference, my mom had to look very close in order to spot the difference.

My strength in the gym in my legs and calves still seems fine. My walking seems fine and I have not had any stumbles or trips. However, the twitching is just not going, and I still do, if I am on my phone for too long. Have. Problems. With my. Hands.

I'm a 31 year old male from the UK. The reason why this is so worrying for me is due to the fact that I had a great uncle. He died from mnd disease. And my father. Also had motor neuron disease from which was bulber mnd I do not, however, myself have any symptoms in terms of slurred speech or twitching in my Jaw or Face.

My fathers company spent a lot on his treatment during this time and he was flown out the country for stem cell / treatments etc in Zurich was seeing some of the best specialists etc this is what my mum said about this.

“My father died of MND and his uncle before him (no previous family ties) I recently spoke to my mother about this who said that my father was very worried about passing this on to his children

She said that when tested it wasn’t genetic he was just unlucky would this be a common phrase to say that the familial link would not be present for his children going forward”

He was diagnosed in 2012

I am wondering what people think this potentially could be which is causing it And what people would recommend to do going forward.

I did have two IV drips for a few days which reduced my twitching 2 days afterwards ( not straight away) for few days but then it would return I understand this may be a placebo etc

I would say that my anxiety is very high to the point in the faqs I am researching this every day looking on forums effecting relationships and also loosing my appetite feel like I have a dark cloud over me

Sorry if this doesn’t make much sense I have tried to be as thorough as possible

I forgot to add I also had Covid in this 6 week period I imagine this could be quite important to add
 
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Iv drips for twitching? One can twitch from dehydration of course but never heard of this for twitching. Was it a regular gp or some alternative medicine? Doesn’t sound like ALS to me Post covid is a possibility certainly

Re genetic testing in 2012. That was the year the c9 test became available. It was in the spring here. Sod1 and a handful of others were available too. Sod1 and c9 make up the majority of fals cases especially in the UK so if your dad was negative for both that is very encouraging
 
Hi Nicki ,

Hope your well

It was one of those vitamin ones which has b12 electrolytes and vitamin D in my GP mentioned electrolytes when I went in about this

Also got tested for clinical weakness in my hands and legs when I went to physio and my pincer grasp test has actually improved grip got stronger etc can walk on heels of feet stand on tip toes etc

I had Covid on the 19th of September this was slightly after the twitching started
 
Very sorry about your dad and great uncle. I don't see any reason to worry about ALS. Calf twitching is quite common and your continued strength very reassuring. If your issues become an obstacle to everyday activities, you might consider screening for postviral complications as Nikki suggests.

Problems with your hands when on your phone too long suggests maybe using voice recognition for a while...a hand therapist could suggest exercises, as well.
 
Hi I will sort these ,

Also paid to do this Tuesday - a comprehensive blood panel and health check by a commercial company

Also my twitching as said isn’t all the time very rare except when I’m lay down when it’s quite frequent or sat down however these last few days it has lessened in my left leg where it was worse and now increased in my right leg also getting slightly more twitching in my biceps now all just very strange!

Hope all is well over the other side of the pond keep safe

Buna
 
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Hey Guys

Went to physio today who was really clued up on als he did a full mot check for strength ( clinical weakness) and found nothing tested reflexes no cause for concern have a really stiff neck though which may be effecting hands crazy how our bodies work

Whilst I was there my elbow started twitching which could be seen but he just said there’s so many reasons like you all do here which may be reassuring to others

Still have twitching in calves but hopefully this all resolves soon
 
I have received my blood test results today here are the pointers from the test to be looked at -

HDL 0.88

vitamin b12 very very high but i did have a b12 injection recently 4000

Antistreptolysin
O
(ASO) 282


can any of these explain my symptoms

Kind Regards

Buna
 
Well the aso is high. I would imagine they want to repeat it? It should go down if recent infection. If you had a b12 injection was it to correct a known deficiency? Or are you seeing what we call a functional medicine doctor? I see you had b12 in the iv for twitching which is a little weird.

None of these have anything to do with ALS. If you are getting no traditional treatments on general principles stop. You are probably confusing your body and making symptoms appear or worsen.

Not sure about hd
Uk does cholesterol values differently than US
 
Hi Nicky,

Thank you for the reply it said this in regards to the ASO it said this ASO is an antibody produced by the immune system response to infection in A streptococcus bacteria
Reach a peak around 3-5 weeks post - infection and fall to insignificance after a period of around 6-12 month . Your ASO level is high signifying a current or recent strep infection

Kind Regards

Buna
 
Hey,

Just received this unsure what any of
It means

Thank you in advance

Buna
 

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First nothing to do with ALS.

The transitional defect is a spine condition you were probably born with. It can predispose you to back issues. The nodule is a also a spine issue a type of disc heniation which may be asymptomatic but can also predispose to back issues

And you have some bulging discs. I would be proactive with back health. Appropriate exercise including flexibility training, maintaining a healthy weight and always having a supportive sleeping service
 
Could this potentially explain my twitching ?

Nikki
 
Maybe. Could be irritating your nerves. But twitching alone is so common anyway
 
Please see attached

Is this a clinical report done by neurologist?

I recently have had real sharp twitch / pain electric feeling constant in palm of right hand where the problems seem to be however my twitching seems to be in calves feet biceps and hands unsure why it just isn’t clearing up but twitching seems to be getting worse and spreading
 
I removed the clinical note ( which indicated a normal exam and a plan for an ncs and emg but no signs of mnd) because it contains your name yes it is a clinical report or note and one any of us would be happy to see. I also accidentally removed the mri and can not retrieve it but you already posted it above

Let us know after the emg when you have results
 
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