Introduction

[Rod]

Hi Everyone,
My name is Rod I am a 76 year old male. Always been really fit and in excellent shape. In 2021 I was planning my 15th marathon then in Feb 21 I had a COVID Astra Zeneca vaccination. Two weeks later whilst running my left leg seemed heavy and became weaker despite physio throughout the year when a neurologist diagnosed MND. It is now described as A Typical MND as progression is slow and after almost two years confined to the muscles that lift my legs. The opinion as to whether the vaccine was the cause is mixed but it seems if not the cause then most certainly the shock trigger.
Since August I have been on the Trust trial and not sure whether it has made a difference, stiffness in my legs is the main issue and on days that I am not stiff I genuinely feel I am getting better. One thing since the trial I no longer get muscle cramps.
I see there are stem cell providers claiming that stem cell therapy can protect existing neurones and improve mobility. None of these therapies are approved hence the established medical profession are negative but that does not necessarily mean they could not be effective. Costs for stem cell transplant procedure are reasonably modest does anyone have any more information or know anyone whose tried it?

[Zante]

Rod Hello and welcome to the forum. Did they tell u which type of mnd u have? Am glad to read that its slow progression.

I also suffer with the stiffness. And was an active keen runner.

I don't know anything about the stem cell procedures or know of anyone that's had it.

With the vaccine I would have thought it's a total coincidence. When you think how many millions of doses which were given and how very few people are diagnosed with mnd. Also I heard that the damage done with mnd takes ages before symptoms appear, as in years, its probably just occurred right after the vaccine for you.

Hope u find the forum helpful.

[michelleroberts]

Rod My symptoms also started after my Astra Zeneca vaccination in March 2021 - prior to this I had not been to my GP in over 25 years. I started with a limp and jokingly said the Covid jab had “shrunk” my leg.
My limp got worse and led to foot drop and now I use a walker around the house and a wheelchair outdoors.
Two neurologists say MND/ALS - going for my appointment at MND clinic in February.
I am in other groups and fit and healthy people also had symptoms start after Covid vaccinations.
I have filled in the NHS Covid vaccination damage form online and although the claim may not be successful it will have been noted - others are being asked to do the same.
.

[shelly21]

Rod welcome to the forum.
I can't comment on covid jab.
however I was very fit and healthy.

Re stem cell its my opinion that if it worked then the nhs would be using it.

[Ellie]

Rod For now at least, don't waste your money on stem cell 'treatment'.

[Rod]

Rod My symptoms also started after my Astra Zeneca vaccination in March 2021 - prior to this I had not been to my GP in over 25 years. I started with a limp and jokingly said the Covid jab had “shrunk” my leg.
My limp got worse and led to foot drop and now I use a walker around the house and a wheelchair outdoors.
Two neurologists say MND/ALS - going for my appointment at MND clinic in February.
I am in other groups and fit and healthy people also had symptoms start after Covid vaccinations.
I have filled in the NHS Covid vaccination damage form online and although the claim may not be successful it will have been noted - others are being asked to do the same.
.

Thank you everyone for your warm welcome, I do hope that life is kinder to you all in the future.
The events and symptoms are very similar to mine Michelle. 4 Neurologists have confirmed that I have MND based on watching my muscles twitch and the attendant weakness lifting my legs. My consultant is now saying maybe we should take another look in view of the slow progression!
Michelle I was vaccinated at the Rugby ground in Twickenham just in case there are other so called coincidences?

[Ellie]

... 4 Neurologists have confirmed that I have MND based on watching my muscles twitch and the attendant weakness lifting my legs.

🤨 I should hope there was a lot more to your diagnostic process than that…

No physical exams, EMG, NCS, scans, lumbar puncture etc.?

[Triciamac]

Hi Rod , my partner got his first covid symptom the day after his 2nd Astra Zeneca vaccine . His arm felt heavy and his fingers tingled on vaccination site . This was explained as a fairly normal reaction which it is . Over the ensuing weeks it got much worse very quickly and we had to chase up GPs for an urgent neurological referral.To cut a long story short
He got diagnosed with MND within 5 months of his vaccine . Previous to his vaccine he was a very fit person who worked in construction and loved uphill / downhill mountain biking and had no symptoms of MND whatsoever. I’m an ex nurse and know in my heart it was the vaccine that caused it .
The disease progressed very quickly for him .
His neurologist filled in a yellow card and so did we along with a vaccine damage claim a few weeks ago . I’m not holding my breath re the vaccine damage claim but feel that at least it is in the system .
Glad you found this forum it can be very helpful.

[Angiemann]

My Husband was diagnosed in Dec 2022 with MND. His symptoms started 2 months after his covid jab in May 2021. He started complaining of a weak feeling in his left leg and although he now has a prominate limp and foot drop in the left leg he is still able to walk unaided etc. The EMG showed nerve damage in other areas and twitching so we were told he had ALS. I did think at the time about the coinsedence of the jab timing but thought nothing more of it. He didn't have the Oxford one though he had the Pfizer one. He is 44, with no family history and was fit and healthy before this.

[Arcadian]

Sorry to read of your MND diagnosis.
My first symptoms occurred 3 months before my first Covid vaccination jab.

Medicines and vaccination 'events' have the yellow card reporting system, via your GP.

Statistically a correlation between a Covid jab and ALS / MND within a month or two is extremely unlikely (time taken for a significant percentage of motor neurone cells that have failed before symptoms are noticeable, for example. Eg. The mechanism of how MND progresses as motor neurone cells fail irretrievably to a critical level of functionality over time - the main reason as to why a 'cure' is elusive).

Other markers of concern would be a step increase in diagnosis incidence over time across a population, with correlations with other countries.

The appropriate route for concerns, is reporting via medical professionals.
World wide, the incidence for concern is not statistically significant at present.
Peer reviewed reports back that up.

If I had a concern around one form of now relatively universal and documented medication, I wouldn't be enthusiastic about trying less accepted forms.

I empathise with a natural curiosity of "why did this happen?" - 2019 I had an adverse reaction after an accident and can't be sure if minor puncture contamination, medication for that, or a pre-existing autoimmune condition (or all three) caused a serious inflammatory response, or even initiated a step towards MND.
However, I will mever reliably know as I have just about every contributory vector for MND in other areas from heavy metal exposure in childhood and work, familial neuromuscular genetic issues, Lyme Disease high risk, immunological risks, high activity level exertion risks, stress risks, etc.
(I also participate in formal 'early signs' and 'progression' research, so at least medical professional researchers may find some way in on this illness that may mitigate things for others in the future).

[Zante]

Arcadian can I please ask how you have become involved in the early signs and progression research as I am interested in taking part in this as sounds very helpful. Is this remotely or attending a specified hospital? thanks, oh yes well worded post by the way!! x

[Arcadian]

Zante I look at reseach news on here and the main MNDA page and if it has a social overlap for me (day out / catch up with friends) in a location away from home, I see if it fits in with other things I like in that area regarding travel and timing.

Some of the stuff I do is 'quality of life' type questionnaires at home / online.
The lab stuff has mainly been in London and a couple of researchers are aware of my travel flexibility for other tests in the near future, so I sometimes get a prospective invite.

Disappointedly, just an annual paper questionnaire has come via the MND MDT clinic I'm in, compared to my own proactive engagement.

My personal view is that the lab type research potentially gives a future 'way in' on medically 'managing' MND.
I don't feel a 'cure' is a reasonable expectation in my (reduced) lifetime, (due to the nature of disease mechanism and time taken to diagnose) but I would argue that finding an earlier (bio) marker, may give opportunity for at least eventually finding mitigating medication that reduces severity or slows progression.
Even if research is inconclusive, it's not a waste as methodology is sufficiently robust to give additional insight.

My original work background was in science & engineering test & measurement and complex control systems fault diagnosis, so I understand some of the methodology, as well as informal discussion with researchers on some measurement tech ideas.

Pic below is research into using transcranial magnetic stimulation as a potential diagnostic tool. Neuro filament light chain blood analysis was taken at the same time as a comparison opportunity.

Screenshot_20221221_202426_Gallery.jpg

[Zante]

Arcadian perhaps I might just wait for an annual mnd paper survey/questionnaire!!!

I admire you for all that you are doing to help towards finding anything that might indicate possible causes and further information about mnd.

I know my local hospital is involved in some of the newer trials and I read something about it being a main centre for one particular trial . And yet I have never had anything about research mentioned to me. Thanks for the info x

[Claireflo]

Welcome to the forum Rod, loads of knowledge and support available through this forum.

[Derbyram21]

Welcome to the forum sorry for your diagnosis but lots of support on here