OK, so I’m new here and have only joined to get your thoughts.
I have NOT been diagnosed with MS, I am still looking for a diagnosis. Apologies for the long mail - I only wanted to write this the once… it has taken me three days to do so.
Since mid February 2021, I have been struggling with some strange and debilitating symptoms.
I am a chap that has always been working hard, doing very long hours, with two small businesses and a farm to look after.
I am 58.
I’d been getting some very occasional small visual disturbances first thing in a morning for years. The odd “missing patch” and what I took to be “floaters” that would occasionally zip across my vision. No real bother. Also pins and needles in my legs relatively frequently, that I just put down to long hours tractor driving. These would be mostly gone by the next morning. Farms are dangerous places, and generally we’re a tough breed - keeping going through injury and breakage…
I was always a bit of an insomniac too, with 4-5hours sleep being normal over the last 30-40 years. A combination of hard physical work most days and some serious stress at times, but generally I ate and slept well.
Recently, on hot summer days, working hard I’d find my arms and hands would gradually begin to lose feeling. I could move them OK (although they felt really heavy) and progressively through the day I’d get a numbness that led to burns and cuts I didn’t know I had done… that feeling would come and go. Trapped nerves the physio said…
One afternoon in February this year though something fairly dramatic happened. I don’t know what, but it was like a switch had been thrown, and everything changed.
That first evening, I remember feeling incredibly tired and disassociated, with a brain fog and balance problems. I felt my speech was a bit slurred, and that I couldn’t think straight or remember basic things. Some of that got a bit better - most didn’t.
That disassociated feeling and the overwhelming tiredness persisted for several weeks so I went to the GP.
He said that it was probably just overwork and stress, and told me to take it easy. He also took bloods. These showed a very low ferritin level (stored iron), low iron, high cortisol levels, and something that showed a high level of adrenaline present (or had been). That wasn’t particularly clear.
I have not had Covid by the way (to my knowledge) and seemed OK with the jabs.
I have asthma (NSAID inhaler controlled), and an allergic rhinitis that can be a right pain. In most other respects I was relatively fit and well for 58.
I went onto high dose iron supplements for 4 months, and that had no effect - other than some challenging and unpleasant effects on my bowels!
Ever since that February evening, I feel like there is a constant dark heavy cloak of tiredness and weariness that just wants to completely envelop me and tirn the lights out for a long time. Like a large extremely heavy black tarpaulin that has got loose off a stack and fallen right on top of you.
My arms and legs and neck are at times just just SO very heavy, it is a real effort just to get out of bed to go to the bathroom.
I can fall asleep propped up against almost any object, standing up, or even sat in the tractor or loader with the engine running.
It was becoming quite dangerous but I kept really fighting so hard - just trying to push through it.
The farm doesn’t just stop because you’re not well.
Thankfully I didn’t have any major accidents, but I realised after a few close calls that even modest amounts of working with big heavy equipment, dangerous surroundings and animals couldn’t continue - and so I scaled things down, losing income but gaining some slight peace of mind.
Both arms suddenly became (and still are) largely numb from the elbow forwards, and affecting the lower part of my hand - almost in a straight line. Both became numb at exactly the same time and it progressed over a few days - maybe a week, to where it is now.
This means my ring/little finger and palm in line with them are effectively numb to most things - although there is still some sensation getting through… especially if accidentally hitting the area with a hammer… (not recommended).
That dark, heavy tiredness though is all-pervasive and I have to try and keep busy in any way I can so I don’t fall asleep.
I manage a maximum of about 7 hours a day fully awake. A huge contrast to before. It takes me well over 90 minutes to get out of bed and dressed. It used to take 5-10.
I’m now lucky to be out of bed before 11AM, and am normally back and fast asleep before 7:30PM.
My balance occasionally just “goes” too with no warning, and I have to walk around clutching at things so as not to fall.
I have pain in most of my joints, and my feet are the worst, meaning it really hurts to walk.
Once I grin and bear it for an hour or so - it gets a bit easier though. That pain returns as soon I have rested (sat down) and then get up again.
Everything is an effort, and I mean absolutely everything.
I’m pretty bloody stubborn and so just keep fighting it. It’s not getting any better though - if anything it’s worsening.
In order, the most difficult problems to live with that I have are as follows.
Overwhelming tiredness all the time
Painful feet, joints and back
Numbness in arms and hands
Occasional (increasing in frequency):
Poor balance at times (comes and goes)
Pins and needles in legs
Restless legs at night
Occasional (the same or decreasing in frequency):
Visual blocks (chunks out of focus or not there)
Headaches, all encompassing and tight pressure type headache.
This week, after 9 months of this, with no improvement and no diagnosis - I have been referred to a consultant in General Medicine by my GP to see if he has any better ideas.
The GP can’t explain it.
Unfortunately with everything going on in the NHS the appointment is over four months away.
If the symptoms continue to worsen, then I’m wondering if I’ll even make that.
Yesterday a friend, whose wife has MS said that my symptoms “sounded a bit like hers” and so she gave me the link to the website and this forum…
Are there any medical professionals on here, and has anyone heard of similar symptoms?
What the best way to get a diagnosis?
What do you need to do to rule MS in or out?
Any useful comments welcome…
Fordy the Farmer