Very worried awaiting diagnosis

[Shepster]

Hi, I’m male 48 from yorkshire

I’ve not had a diagnosis yet but I’m getting very worrying symptoms

My story starts at the beginning of August 18. I had decorated 2 bedrooms the previous month so felt ok. Only a bit of painting and putting up the odd ikea wardrobes etc so nothing too strenuous.
So at the beginning of August, I noticed both my knees were painful whenever I bent over, even slightly, as it was both knees I thought it was strange. I also noticed at the same time that both my thighs also felt weak whenever I tried to raise from a chair or the toilet seat. It wasn’t too bad but was made much worse by the knee pain that also hurt when raising. In the 5 months since this started I can still walk ok but my thighs still ache and I have a tingling in them all the time. The only thing I’ve noticed is that I believe my right thigh looks thinner. I’ve measured it and it’s still the same circumference as the left but the muscles look smaller so I can see the 3 front individual muscles instead of 1 full leg. I believe it’s due to wastage That i can see the individual muscles in my left thigh.

I had an x-ray on my knees and nothing showed up.

Cut to beginning of November and one day while at work I noticed both hands felt weaker. Both had been fine before and both seemed to hurt on exactly the same day. I was able to do all everything, I could pinch, grab, turn keys etc however, anything heavy would send a burning/stinging pain in my wrist and up my forearms. I also noticed that repetition made my hands crampy and again I got the burning pain in my like when you have done hell of a lot of work and your arms sting) it was that feeling but happened within 30 Seconds when doing something repetitive. Although i’ve Had this pain for 2 months I don’t think it’s got any worse and I still have dexterity in my hands ( I can fasten the top button of my shirt). But I’m a little worried that they are definitely weaker than they were in the summer and get painful burning stinging pains in my hands, wrists and forearms when I do anything repetitive very quickly.
I also think the muscles in the back of my hand seem watsted. At first I wasn’t sure but the tendons/guiders in my hand are easily visible. And there seems to a be lots of loose skin.

Then at the beginning of December I noticed a new pain when walking my dogs. It first started as a pain underneath my outer right ankle. It wasn’t too bad but over the weeks now includes a pain in the back of my Achilles. I’ve also noticed this last week that when I lift my toes upwards I get a slight pain in my shin area like the muscles are struggling to lift. I have noticed that I have muscle wastage in my ankle shin area, however, to be fair i also have the same wastage on both legs. I can still do calf raises and walk on my heels easily and I have not had any issue with balance, falling or dragging my foot as of yet.

I am worried that the shin/ ankle pain maybe the start of foot drop, but that has happened yet but it’s only been a month.

On New Year’s Eve night I had my first bout of twitching. they were very pronounced and lasted a few hours in my left thigh ( surprising as I think my right looks thinner than my left). I have not had them since.

In summary the reason I am worried it’s

Stinging burning pains in all 4 limbs
Painful knees (worried my thighs are not supporting the knees)
Weakened thighs, (and possible wastage)
Weakened Hands that burn/sting very easily on repetition.
Pain in ankle and shin which I worry is the start of foot drop
1 bout of twitching in one limb, not happened since.
All muscle wastage looks the same on the other side except my thighs seem a different shape with more pronounced muscle definition.
Can walk on tip toes and heels and can do calf raises ok, never had a fall.

Unfortunately I am not under a neurologist, I am under a rheumatologist as I was first referred when I just had painful knees and weak thighs but it’s taken so long that my symptoms have progressed to be a neurological issue.

As you can imigine I am scared stiff, I’ve not been sleeping for the past 2 weeks. I have my emg and nc in a Sheffield hospital on the 7th January but will not get the results until my next appointment on the 22nd January.

Thank you for reading and I would love to hear you thoughts.

[Terry]

Hi Shepster and welcome to the forum,

Sorry to hear that you have so many problems, I am no expert but can give you my opinions on some things.

I wonder what tests you have had apart from the EMG in a few days time.

Stinging burning pains in all 4 limbs..... Not common with Mnd.

Painful knees (worried my thighs are not supporting the knees)..... Not common at early stages of Mnd.

Weakened thighs, (and possible wastage)
Weakened Hands that burn/sting very easily on repetition.
Pain in ankle and shin which I worry is the start of foot drop...... General weakness is common but again burning, stinging and ankle pains are not common.

1 bout of twitching in one limb, not happened since..... This could be down to tiredness and being stressed with worry.

All muscle wastage looks the same on the other side except my thighs seem a different shape with more pronounced muscle definition.
I also think the muscles in the back of my hand seem watsted..... These are quite common with Mnd.

I think that it is unlikely that you have Mnd because of many of your symptoms and how they seem to have affected both sides of your limbs at the same time. There are so many different things that it could be.

I hope that you are a temporary member of the club and soon get a different diagnosis.

Best wishes, Terry

[Barry52]

Hi Shepster,

You said you are under a rheumatologist at Sheffield. If you are wishing to see a neurologist then the Royal Hallamshire has one of the UK’s leading team in neuroscience so you might want to ask for a referral and they will conduct all the tests. There is no biomarker for MND so they have to rule everything else out before conclusion.

Best wishes,
Barry

[Kayleigh]

Hi Shepster and welcome to the forum,

Sorry to hear that you are not feeling well. It is understandable that, due to the incertainty about what is causing your symptoms, this such a worrying time for you.

Please try not to panic because it is a case of taking one step at a time before the medical professionals can reach a diagnosis. At this stage, you havn't had a specialist's opinion about whether your symptoms could be caused by a neurolgical condition, and so try not to jump to conclusions about what your diagnosis could be.

My thoughts really reflect what Barry has already said about the possibility of you being referred to a neurologist for their specialist opinion.

As you have had further symptoms since your referral to a rheumatologist, you may wish to see your GP again for their opinion about whether your symptoms could be caused by a neurolgical condition. If your GP does think the cause could be neurological, then he/she should refer you to a neurolgist.

Even if a neurologist thinks that MND might be a possible cause, there are medical tests that would need to be carried out to rule out the many other possible causes that it could be.

Perhaps book an appointment with your GP to discuss your new symptoms and take things from there.

It sounds like you must be very anxious if you have been unable to sleep for such a long time. It would probably be good for you to see your GP as soon as possible, so that you can get some help to ease your anxiety.

Best wishes,
Kayleigh

[Ellie]

Hi Shep,

Sorry you are so stressed and anxious.


Your symptoms don't fit ALS/MND, which should be a relief to you. I think seeing a Rheumatologist is a good place to start.

It is next to impossible to self-evaluate atrophy - people just aren't symmetrical.

Our muscles don't actually FEEL any different, they just DON'T WORK - the signal to get them to move doesn't get through because the motor neurons are damaged or dead.

Best wishes,
Ellie.

[Lynne K]

Hi Shep, I'm sorry that you have been so worried as to loose sleep. As others have said most of your symptoms aren't indicative of MND. But most of us are not medically qualified. I second the suggestion of going back to your GP. Seeing as you have developed more symptoms since you first saw them then maybe telling them about your current status and your concerns, they may be able to get your referral done earlier. Good luck. Lynne

[Shepster]

Hi Terry

The only other test ive had is a blood test and an xray on my knees.
The xray came back fine
My blood tests showed no inflammatoey markers and my ck was only 204 so no myositis.

[Shepster]

Hi Barry

Yes im thinking i may go private and see one of those neurologists after my emg test on Monday.
Can one of these private neurologists that also work in the Royal Hallamshire see my emg results

[Shepster]

Hi Ellie


Thank you for replying.

My shin muscle has got worse in the last few days. I have a sort of burning/ pressure feeling in the shin muscle that goes up the side of my lower leg. For now i can still lift my toes but i seem to be losing the range of motion in my foot.
Im worried this is the start of my foot dropping.

Its hard to describe but my shin muscle feels very tight, there is definitely a sensory feeling when i extend my foot upwards i can feel the muscle struggling to pull it up.

Is this how muscle failing starts. Ive heard the first place to go is usally the foot drop. I know others dont notice it until its happened but ii notice it alot. I dont want to use the word pain, but i do get a small pain in the muscle when its fully extended pointing my foot upwards. The left leg is fine, no roblems with that muscle at all. (I cannot see any wastage on this side of shin muscle.)

Just checked and the muscle that hurts is the extensior digitorum longus. It also hurts when i press down the muscle, but the other leg doesnt.

I know you said it doesnt sound like mnd but this is a worrying step. I havent had an falls yet as the range of lifting is still pretty goodbut im worried i will wake up one day and the neurons will have stopped working.

[Shepster]

Hi Lynne

Thank you for taking the time to reply.

So i am really worried about my foot (although the pain is in my side lower leg.
Is pain and burning not a symptom?

My worry is that this is just the start and the burning im getting is a precursor to drop foot. Ive had the aching for a month or so and its not going away but its gone from a foot pain under my ankle to also include a achilles pain and a burning/aching from the extensior digitorum longas
It definitely gets worse when i walk rather than sat not using it.
Ive had the knee pain and thigh aches for 5 months now and to be fair dont feel much worse in both areas would you expect to see more of a difference in the thighs after 5 months if it is mnd

[nunhead_man]

Hi Shepster

Welcome!

I get really anxious about every extra little twitch and ache - but as Ellie says, this disease is just about motor neurone stopping working and therefore the muscles they attach to stopping and then wasting away.

I wanted to ask what set you off on this track? Do you have a relative with MND or somebody that you know has it?

Best wishes for a clear diagnosis

Andy

[Shepster]

Hi Andy

I admit i have extreme health anxiety.

i saw something on tv recently about someone with mnd and the symptoms this guy started with resonated with my own.

I am male ,48 and although it is usually linked to older people, men my age incidence starts to go up.

Having weakness in all 4 limbs, occasional twitches, perceived atrophy. I even think my reflex is hyperreflexic as my knee shoots up when tapped at home. When i stupidly googled the symptoms it came up with als/mnd. Which led me to this website.
I have since developed the problem with my right foot so i am more worried than ever before.

My foot is my biggest worry as i can feel it getting harder to pull my toes upwards so i may be getting the foot drop. Its a definite ache that hurts more when i pull my toes up and use the muscle.

Is it really unusual to get these pains in my shin when the neurons are dying?, ive had the foot one for a month and im dreading the day i wake up and i can no longer use it.
Surely when 50% of the neurons or whatever the scientific number is where the muscle is weak but can still be moved? Isnt thst the stage im at?

I initially thought it could be myositis but my ck levels are normal. Then once i started with the weakness and cramping in my hands I knew it was serious and led me to mnd. Todays pain has been in my wrist, a sharp pain that comed on every few minutes but only lasts seconds thankfully.

Ive been thinking about what you guys have said about muscle wastage and you guys are right that i cannot definitely tell. I think i do have some but as its both sides of my body im inclined to believe its not actually affected me yet.
However, i am really worried about the weakness and pains.

I have my emg and nerve condition study on Monday. I am scared stiff. Ive heard if it starts making alot of noise it means there is muscle damage which i think will mean i have mnd.

After doing a little research it turns out my age group 45-49 has an incidence of around 53 new diagnosis's per year. Or equates to 2.3 per 100,000. 10% of those are passed down from family so 47 people are diagnosed are sporadic. I guess it is very rare but someone has to get it.

[jaffabeach]

Hi there,

Kayleigh's suggestion of booking an appointment with a GP makes sense. I would ask for a GP with some neurological experience. You might need to be instant on this but its worth persevering even if this means calling in to the surgery in person to arrange an appointment.

I would be worth asking the GP if you could use the same GP until it clear what might be the issue. Save having to explain what the issue might be over and over again.

and then what Barry said here

Hi Shepster,

You said you are under a rheumatologist at Sheffield. If you are wishing to see a neurologist then the Royal Hallamshire has one of the UK’s leading team in neuroscience so you might want to ask for a referral and they will conduct all the tests. There is no biomarker for MND so they have to rule everything else out before conclusion.

Best wishes,
Barry

It helped me to keep notes of symptoms and then who you see and what action they agree to take and by when. It's not very exciting to do but it may help you know you've got everything recorded on paper ( computer ? ) so that i wasn't thinking about it every moment- though I guess this is easier said than done,

Kind regards
Jaffabeach

[nunhead_man]

Hi Shepster

Is there any way in which you can dial down your extreme health anxiety?

It may be that getting stressed will make things worse.

As Ellie has already said, there is really no pain associated with motor neurone disease.

What I've said before elsewhere here is that motor neurone disease is no respect-er of balanced pairs of muscles - so in my forearm for example I have pulled muscles where the extend / contract pair is unbalanced.

But this is a normal muscular ache and nothing to do with motor neurone disease per se so there might be pains your shin from exercise - not from when the neurons are dying.

Again, weakness in hands could be motor neurone disease but cramping?

And pain in your wrist could possibly come from exercise but certainly not from motor neurone disease.

Do let us know about your emg and nerve condition study on Monday.

Concerning numbers do have a look at some other threads on the forum - somebody will correct my technical terminology that incidence is quite low perhaps only 5000 people extant in the UK at any one time with the disease because diagnosis is often late and some people do not live very long post diagnosis but it seems that possibly one in 400 or more have a diagnosis of motor neurone disease at death.

Take it easy over the weekend as worrying will probably only make things get worse.

Warmly

Andy

[Shepster]

Hi Guys

Thanks for all replying above, i really appreciate it. I am trying to get a hold of my anxiety.

Ive been thinking about all my pains. Could it be that i am having spasticity in my muscles and they are causing the pains? Is that how spasticity works in the early stages of als/mnd?

Ive been trying to get my head around how the stages of mnd affect a muscle. Im struggling to be honest. I get that neurons are attached to muscle fibres, so as they die off the muscle fibre doesnt get the signal. Now i assume there are thousands of fibres in a single muscle. i think im correct that neurons are batched in motor units? So do single neurons die off and therefore each fibre shuts down singularly or does the muscle shut down as one complete motor unit? If it shuts down as a unit where does muscle weakness fit into the scenario. I checked everywhere for just a simple explanation but i cant find one. Im just trying to get my head around how it works, does progressive mean one complete muscle at a time or that it progresses one fibre of a muscle at a time?

Sorry if im annoying, this is my lost post for the weekend.

Regarding my emg on Monday? What kind of noises will a "dirty" emg make? Will it be quiet if its fine?

Thanks