My Health Journey

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Hi, everyone.

I thought I should post an explanation of why I’ve not been very active on the forum as of late. It relates to health issues, and the following may be a little dark or anxiety-triggering for some - please feel free to stop reading here if that’s the case.

Back in January 2024, I developed very pronounced and very ‘coarse’ fasciculations which presented in both legs (thighs, calves and feet); they seemed to appear spontaneously after a particularly challenging ramble. I went to my GP in June of 2024 who gave me a full neuro exam (which I ‘passed’) but refered me to a neurologist for further investigation.

In May 2025, I managed to turn my ankle while out on another ramble. I mention this here as by the time I saw the neurologist, in October 2025, I was also presenting with partial foot-drop (which the ankle injury may or may not have contributed to).

Between the onset of the twitching and seeing the neurologist, I was experiencing cramps, stiffness, and fatigue in my legs; I also develiped lower back pain which slowly made walking more and more intolerable as time passed.

​I had another neuro exam, ten viles of blood taken, and an NCS and EMG ordered during my next appointment; the neurologist didn’t seem too concerned from the exam in general, but was mindful of my ankle weakness and my inability to stand on my heels.

In December 2025, I had both the NCS and the EMG. Not much was discussed with me, but I could sense the concern over the EMG; the NCS test was apparently normal.

The neurologist wrote to my GP with a diagnosis of Benign Cramp Fasciculation Syndrome in early February 2026 — this was a huge relief for me as, for the best part of two years, I was fearing a diagnosis of motor neuron disease.

I started getting on with my life, and wasn’t too worried when I attended my next neurology appointment in late February 2026. I had another neuro exam, more blood taken, and an MRI booked in (which I’ll be having next week). It was then that the neurologist explained to me that my EMG was showing some red flags — based on these results, and combined with my other symptoms, MND would usually weigh in as a very serious contender; however, he didn’t believe it was MND in my case as several things (such as the relative length of time involved) just didn’t quite fit.

So here I am. We could be looking at a compressed nerve in my back that’s coincidentally accompanied by benign fasciculations and cramps, or we could be looking at a relentless and terminal illness. Only time may truely tell.

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Thats sounds tough. Kepping my fingers crossed for you.

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Thank you.

There’s a lot riding on the MRI. I never thought I’d actually be hoping for something that shows my back’s smashed to bits, but I’d take that news with unicorns and rainbows given the alternative.

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Thanks for the update Mart, and really sorry that you have to go through such stressful uncertainty. That’s really tough. Hope to hear that things have worked out for the “best”.

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I didn’t know your views in this regard, but I’m praying for you and have hopes for the best.

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Thank you, both. Your kind words are very much appreciated.

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I’m sorry to hear about your problems. I hope the MRI results will bring good news. Take care!

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Very best wishes.

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I’m so sorry. Best wishes for the MRI result and the outcome.

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Very sorry to hear this Mart. Try to keep active and moving the best that you can msnage.

Hopefully the MRI will provide some more insight so that some targeted therapy or intervention is possible to improve life for you…

Keep strong…

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Thanks, everyone.

If it means mobility challenges from back issues, I’ll manage somehow. I just hope it isn’t the other - that’s what’s really scaring me.

I wasn’t doing too badly through most of it - concerned, yes, but not overly anxious - especially over time with no major progression of alarming symptoms. Now, though… after that EMG…well… it’s tough.

I know that that my neuro is confident enough to give an opinion that he believes it isn’t MND, and I’m tyrying to take comfort from that. But we are getting pretty close to the wire now… and some stuff does certainly fit.

Unfortunately, trying to get access to your medical records in the UK is pretty much impossible. I may not know anything else, now, until my next appointment in June. Torture.

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Holy cow, that’s torture! A scan next week, results in June!

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Good luck with the MRI. My thoughts are with you.

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Best wishes as well from my side. Even though this doesn’t sound like a very comfortable situation, stay positive!

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Oof? Can your GP or Neuro not do anything about that?

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All the best to you, hope it’s just a messed up back like you said.

What is the NHS afraid off? That people will self diagnose or go to private docs?

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Wishing you all the best!

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I hope the MRI brings knowledge; in my recent health travails I’ve found it’s just good to know…

I’m praying for you. If you’re not religious, you can take that as knowing someone is hoping the best for you.

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my deepest sympathies & condolences. i’d prefer not to get too into the details but i also have been suffering from various things since the beginning of the year last year, all of which culminated in an episode that has left me dealing with something not altogether known to me yet. for the last few months now just ordinary daily tasks are difficult and i have to budget my energy. even on days when i have more physical ability to get out and take photos i have to stick to just a few paces from my parked car or risk worsening my condition. here’s to hoping for better futures rounding the corner for both of us.

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That’s not good. You really should know what’s going on in there. :scream:

For all its warts, that doesn’t seem to be a problem in US health care. Indeed, US military health system just imposed a “restriction”: lab results will be immediately available to the patient, even before consultation with the doctor. Of course, they padded it with all manner of “consult with your doctor about the meaning of any results”, but all of a sudden all the “pending PCM review” tags came off my recent lab measurements and there they were, ready for me to take to WebMD to see what they meant… :crazy_face:

Even before that, all the major providers I know now have some sort of web-based records access for patients. Even the stodgy military; I have an account on their system where I can even go read the doctor’s notes from every visit and procedure. It’s still all insurance-based, royal PITA, but US health care system does have its bright spots.

I recall meeting a British family on a cruise wife and I took out of Southampton. We and they shared a table in the evening meal, and we discussed all manner Yank-Brit commonalities and differences. One night, health care came up, US was in the throes of the ACA government-sponsored insurance thing. My counterpart at the table wanted to share what nationalized health care looked like: “If I’m in an auto accident, badly hurt, I get what I need pronto. BUT IF I GET A BOIL ON MY BUTT, IT TAKES SIX MONTHS TO SEE A DOCTOR; BY THEN THE DAMNED THING IS GONE!!” Got rather animated he did, bit loud; nearby patrons were looking on, nodding in affirmation…

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