It’s not MS - is it?

New diagnosis and before diagnosis
1

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.

Permanent:

Overwhelming tiredness all the time

Brain fog

Heavy limbs

Painful feet, joints and back

Numbness in arms and hands

Occasional (increasing in frequency):

Poor balance at times (comes and goes)

Trouble walking

Pins and needles in legs

Restless legs at night

Visual disturbances

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

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I am sorry that you’re having such a worrying and frustrating time with these debilitating symptoms. I wish I knew what to suggest, beyond gingering of that GP of yours a bit: it’s not good enough to just shrug and say he or she doesn’t know. With such a marked change in a previously strong and healthy person, the GP ought to be paying a bit more attention than that.

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It is good to hear that you’ve been referred to a General Medicine consultant, even if the wait is long - the full 18 weeks by the sound of it, though better than for some neurologists where the wait is currently much longer.

General Medicine consultants have a much broader knowledge, whereas a neurologist only sees things from their own speciality, so given your range of symptoms that sounds an appropriate referral.

General Medicine consultants are for the ‘awkward’ patients - the ones where it is not immediately clear cut where the source of the problem is. They will likely refer you onto the appropriate specialism(s) for further tests etc when they have figured out which type of issue it is - neurological, endocrine or other! Better than being referred to the wrong speciality by your GP, and then have a long wait for a consultant from the wrong discipline who then refers you back to the GP, leaving you no further forward!

Now of course vets are often the best ‘general consultants’! They really do have to observe their ‘patients’, and have much shorter waiting lists I guess!

It must be very frustrating to have had to scale down the farm, but sounds as if you’ve done the right thing for now. Farming is very hard work - I have some friends who are farmers.

If your symptoms do significantly worsen then try to push for a cancellation appointment. Alternatively see if the consultant takes private patients which may get you seen quicker.

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You need to see a neurologist. It’s possible that there’s another issue, perhaps a pinched nerve, but you definitely have symptoms of MS. They need to schedule an MRI and then go from there.

Keep documenting your problems, when they occur, what you were doing shortly before that, how debilitating they are. Regardless of what it is, getting a diagnosis may take quite some time, but don’t give up. Obviously, something is very wrong. Don’t let your GP just shrug and ignore you.

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ah took me from 2000, to 2016 lol.

OK reading your symptoms. sounds or could be you were hit by a virus.
You work on a farm have you been tested for obvious. Like Lymes disease of WIELS disease from rats. Do you work with chickens or poultry?

If you can get the appointment privately its not as expensive as you think. ALSO i went to breakspeare clinic in hampshire i think and they did a ton of blood tests.

The issue too is the loss of iron etc, so have you been tested for parasites?

Your symptoms could match a lot of things.
LYMES
M.E.(CHRONIC FATIGUE) CAN be triggered by a virus.
FIBROYMALGIA
RA
Lupus
the list is vast.

What stands out for me is this. high cortisol levels, and something that showed a high level of adrenaline present

Now i would think this is the key to what ails you.

High corisol can cause extreme fatigue. Look up Cushings Syndrome can cause bad fatigue and osteroporis which will make all your bones hurt and also muscle weakness.

Now i am not a medical expert but when you present a lot of symptoms sometimes you have to take them and put together a puzzle. the one thing that shouts out is the blood tests. low iron in a healthy person not making iron etc screams blood loss, so i suggest parasite.

see where i come from. I think this is why your doctor has referred you to a medical consultant and not a neurologist. ask the GP if this consultant has private practice if so i would find the money to pay for it some how its worth every penny.

Can you get help with the farm, perhaps are there any government grants for help from farming students etc?

I can see why your worried. Something is obviously wrong but my gut feeling is it isnt MS who am i though i am not medical i just like detective stories and this is one of them. IMHO.

Hum where is HOUSE when we need him. xxx meant to lighten the load. xxx

xxx take care.

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Thanks for what seems a very considered reply. I had been thinking that for a consultant in General Medicine that the old saying “Jack of all trades - Master of none” might apply… but perhaps that’s the right route - if slow.
This morning my middle fingers of both hands joined the numb club.
I think I may go and doorstep the GP on Monday (it’s a 35 minute drive to the village where he’s based) and try and get him to accelerate things.

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Thanks for the response.
Sadly we’re pretty rural and we only have the one GP. He’s clearly just saying wait until the end of February and the General Medicine consultant appointment.
I’ve been thinking about trying to make an appointment at a private hospital to see a consultant - but if I do, perhaps a neurologist might be a better option…

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If the General Medecine Consultant does private clinics, that might be an idea. If that consultation leads to a further and more specialist referral, as it might do, at least you’ll have shaved some time off a long process and doubtless have excluded some possible ailments in the process.

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I would but dont focus too much on neurologist i think your GP is correct it could be more medical. I am assuming the only reason you came to this forum was because a kind friend said they had similar with their MS?

My daughter doesnt have MS has been checked over with MRI you name it. She was finally diagnosed with M.E. and fibro. she also has some similar symptoms to me. I was so worried i can tell you, but reliefed when it wasnt. Her M.E. started after she was hit with a bad bout of pneumonia. She still has M.E. but she has it under control. She also now works too with both, but it took a long time and patience to get her well.

I still think there is a clue in your symptoms. I truly hope and wish you well in your journey to find answers. It is scary. It may turn out to be MS with other things only doctors can work that out. BUT YES you have to fight to get answers. x

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Hi Fordy, I’ll bet it’s took some time before you decided to let anyone know that things aren’t right with you, eh?
I can imagine farmers are a stoic breed…get on with it attitude!

But I thought maybe ME or fibromyalgia…no, we are conversant with MS symptoms but we can’t diagnose anyone.

Only a neurologist can do that or a rheumatologist…
All the best chuck
Boudsx

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Thanks alison100 - all I’ve been trying to do is find answers:

What the best way to get a diagnosis?

What do you need to do to rule MS in or out?

Right at the start I said useful comments were welcome… and yours fits that bill… Thanks!
I’m trying to see if the consultant does do private consultations and where…

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Hi PBMS, thanks for the comment, as originally stated - all I was looking for wasn’t a diagnosis on here - but an understanding of the best way to actually get a diagnosis, and what do you need to do to rule MS in or out.

I think I’m still looking for the answers - but the suggestion of trying to see the same General Medicine consultant (due February in the NHS) sooner via private means - is a good idea. That’s what I am working on now…

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There are risks in picking a condition too soon. You could spend a lot of time specifically seeking to exclude MS, succeeding, and being no closer to finding out what really is amiss. I suspect that this is probably why the GP has preferred a referral to a general medicine specialist rather than a neurologist: if what is the matter isn’t neurological at all, your general medicine specialist might just spare you a lot of time barking up the wrong tree. Of course, if it is neurological trouble, then a neurology specialist referral at this stage would have been a better course, but it sounds as though your GP isn’t convinced about that. So your GP’s judgement might turn out to be spot on or it may not. Only time will tell and there is not use guessing. Hence my suggestion that that you stick with the referral you’ve got, just try to hurry it up.

You asked how they dx MS - there’s plenty abut that if you do a search on the main part of this MS society site.

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not even neurolgoists know how to diagnose MS lol.
@Fordychap
The reason why i say to keep with medical is simple its to save your sanity. IF it is medical you will know sooner then you think.

Trying to get a diagnosis is not easy for multiple sclerosis its down right draining.

If my GP had said go medical i would have no danger, but she was the one who sent me to neurologist. Even back then when the poop hit the fan in 2006 it was going to take me 8 months to see one, so i managed to see him privately took TWO DAYS.

Even then from 2006 to 2016 after a tiring barrage of tests incluiding LP, VEP tests, loads of MRI i was finally told I had Progressive MS.

Getting a diagnosis is hard work not many achieve it quickly. its a case of elimination.

My first symptom was 2000 when i went blind temporary twice.

At the time luckily i had never heard of MS not really not in my circle, strokes etc yes which is what i thought i had in 2000, but it wasnt that. Now if i had been young about 30 in 2000 i would have probably been seen as MS.

I am not trying to belittle your worry, no way, just I am a practicalist and see that SOME of your symtpoms could be medical its like seeing the wood between the trees. So a diversion of medical counsultant is not going to take you too far off your path. its only actually 3 months…hell i have taken longer then that to get results back from tests lol.

In the meantime you have to try and deal with the stuff you have. If you can see the medical consultant earlier then that would be great. It cuts back wait time.

From 2006 i had to take off work for over six months then finally was medically retired still not knowing why my mobility was waning, why i couldnt walk so much, why i was fatigued, the list was endless it went on and on and on. But my mum and husband kept me going forward. In that time too I lost both of them. 2016 and 2017 so now I am on my journey without them. A lot happened to me from 2006 i lost the best job I have ever had, 25,000 per annum i went through so many stages of grief and exhaustion and depression you couldnt imagine. IF one person had reached out to me and made me feel sane again i would have felt blessed. The neurologist told me that diagnosing MS was one of the hardest neurological things they can do. That was from my neurologist. He said some of the symptoms are just crazy. NB he is still my neurologist and we talk about every six months.

ALSO AGE has a factor he told me that. In the end 2016 he actually said to me it was my age that confused him, he hadnt seen many PPMSERS in his practice as its still quite rare back then even more so.

I spent thousands of pounds on medical checks with breakspeare clinic i didnt quite care what the hell it was as long as someone cured me, but even all that drew a blank.

THIS was my journey if you feel like reading it. It will show you just how long it was but I got there in the end lol.

The one lesson actually MS itself has taught me is PATIENCE. I am now a true believer if it is MS it will show itself mine did. WITHOUT a doubt it just took its time getting there lol. x

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If you have or can get access to private healthcare services then do it. You will have answers within weeks rather than months waiting on the NHS. If its the NHS route, everyone has to manage thier own case to an extent. Just keep chasing and following up for yourself. Painful as that may be…

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