Advice please

[Lou2020]

Thank you to anyone who takes the time to read this post. If anyone takes the time to reply I am very grateful.

I have become increasingly concerned over my symptoms, over a duration of 6 months I have got worse. Despite seeing a neurologist 2 weeks ago who told me I have no neurological deficit and I definitely don’t have motor neurone disease however I am concerned he has got this wrong.

I am 26, my grandmother had MND when she was 68 I add.

My symptoms are below
- my right hand and wrist feel weak and like it doesn’t how it should, constantly
- right arm feels weak
- right ankle and foot feels weak
- right leg feels weak
- like my limbs don’t work correctly
- softness in my muscles in my legs and arms, but more so my right leg
- tingling in my right leg, calf and thigh
- tingling in my feet
- pins and needles in my right hand down my little finger and the finger next to it
- weight loss
- extreme fatigue constantly, un refreshed sleep
- tremor in my little finger
- restricted type feeling in my throat, tingling in my tongue and just a feeling like my tongue doesn’t work correctly and hearing in myself that my speech doesn’t sound right but no one else around me has heard it.
- constant muscle twitching in my leg, feet, arm left side, hands, my back
- no desire to eat but still feeling hungry

i haven’t felt ‘well’ for around 2 years I would say but since around May 2020 my health has declined even more.

I saw a neurologist in January 2020, who didn’t raise any concerns. He sent me for an EMG which I had in February 2020 and the needle EMG was done in my left leg only - normal results.

I then had another EMG in June 2020. The needle EMG was done in my right leg, left arm and hand, my back and under my chin - normal results.

As I said since then I have seen the same neurologist I saw in January again in October 2020. He carried out a clinical exam on me and said I have no neurological deficit and does not feel I need to have a 3rd EMG.

im at a loss. Does this sound like MND?
Does a clinical exam as of 2 weeks ago with all these symptoms I mention present clear me of MND?
the anxiety of having MND is ruining my life along with all the symptoms I have.

Any response is much appreciated x

[jd58]

Need to see you GP and get referred for assessment

[Bowler]

My advice is simple don’t be in a rush to convince yourself that you have MND. I just lost my wife to this evil disease and I can honestly say the past 5 years have been the worst of my 66 years on this planet.
if you can walk, talk, eat, drink and wash yourself then get on with life.

[Lou2020]

I was referred to a neurologist and had a clinical assessment on 28th October. I didn’t have a neurological deficit he said snd he said I definitely don’t have MND.

So what do you mean by referred for an assessment. Please explain?

[jd58]

By neurological team including consultant neurologist speech therapist Thoracic dept i First presented to by GP in October last year and got diagnosed with MND in April

[Lou2020]

I had a neurological clinical assessment on the 28th October - 2 weeks ago.

An EMG in June 2020 - normal.

is this not enough?

the neurologist said I don’t have MND. The clinical assessment was normal.

[jd58]

I was told I didn't have it at First too

[Lou2020]

By who?

[jd58]

Neurologist but after I had mri scan nerve conduction tests blood tests and lung function tests my voice got worse and my legs got weaker my grip went too they confirmed it was MND

[Lou2020]

Was your EMG normal?

[jd58]

Yes they checked for a stroke nothing came up

[Suefromwakey]

Hello Lou2020,

I can only tell you how it is for my husband............hes a lot older than you,

Something has not been right for 4 years - started with falling and then not being able to lift foot to stop the car, then drop foot single leg, progression to drop foot both legs,non stop fasciculations legs, arms, stomach,

he's had masses of tests - nothing ever shows up - hes waiting for a 2nd opinion meanwhile 2 years on, since he saw first consultant, - he can now walk 5 steps and cant stand for longer than a few seconds, not only is it harrowing to watch but for him a living hell nightmare,

I will list the tests hes had done to enable you to get your head round it, MRI - several, Several EMG Tests, Leg Biopsy, Lumbar Puncture, think he had a CT,
blood tests - many, assessments by physio, assessments by consultants which include arm strength, leg strength etc.

He has never had pins and needles, never had fatigue although hes not on any medication which might cause that, no tingling, can still eat as per normal,

The thing with MND I am finding out is not only does it take ages for some kind of diagnosis every single person is different there is no test to say exactly if it is MND

So what I would say to you is get to the DR and don't take NO for answer especially since your gran had it, the unfortunate thing about this is it appears it can take years to diagnose as they have to discount so many other things - that's the only way available at the moment,

I'm not going to say take it easy - you are too young for that - use your anger to get the right kind of tests,

Best Wishes

Sue

[Lynne K]

Hi Lou, you have had good advice already, but if you suspect an hereditary form of mnd (since your grandmother died of it) try getting a genetic blood test sorted out by your GP. They may refuse of course, in which case you could ask them for a reliable name of some or other service that is dependable so that you can purchase a test. Lots of businesses advertise their genetic test services but I wouldn’t trust any without having checked them out first. Lynne

[Kara]

mycenium (?) Graves often mimicks exactly the same as MND - perhaps get this tested (blood I think)? good luck

[GaryM]

mycenium (?) Graves often mimicks exactly the same as MND - perhaps get this tested (blood I think)? good luck

Think you might mean 'myasthenia gravis', Kara