Not diagnosed but concerned

very first smptoms were fatigue and back ache

secret

It sounds like you have dismissed radiculopathy - because you would have numbness/loss of sensation on your left side and no fasciculations

[AndyM]

Where do you live?

[AndyM]

I was told on timescales by MND association that something should have failed by now based on twitching 22 months , did you have pain as a presenting symptom and what was your first symptom.

Will monitor my urine now and see

You are welcome to come and see us - I can’t walk now and stuck in bed. Right leg is virtually finished.

Dark urine indicates the muscles being pissed away - muscle wasting byproducts.

[AndyM]

My timescales and symptoms are IDENTICAL to yours except mine is the right side. I went privately to a GP on 13/10/2019 - by 17/10/2017 I had a “suspected” diagnosis from Gibb.
I did some research to find a consultant that was not autistic like Gibb. Found Ashwin Pinto. He gave me a firm diagnosis in early November 2017.

private GP = £90
Neuro exam = £275 two of those
MRi scan = £350
Bloods = £500
EMG/NCT = £165 plus £90 for use of gear at the QA.

I had to get another job to pay for private healthcare and all the gear I have had to buy. You try getting a job when you have MND, working at home !!! - I did it though����


I had to retire early in January 2017 because I was so tired. And I did my own differential diagnosis during the summer 2017 to eliminate all the easy things - diabetic neuropathy, stenosis, B12 deficiency, Lyme disease, radiculopathy, perpheral neuropathy, SA, etc. etc.

Is your urine darker than it used to be?

Well I just haven't felt right and into my 3rd year of this now , I have got stenosis of Lumbar and also Degenrative disc disease top to bottom and based on my EMG (private) that I had done in August last year said pointed to Radiculopathy but its the muscle loss that concerns me as had legs like tree trunks (not now)

Gibb completely dismissed me out of court and diagnosed me with FND!!! -he had his thoughts you might have MND then .

Can I ask where you are symptoms wise now -are you still mobile ,loss of use of anything?

Not really noticed to be truthful although it does seem to get cloudy at times?

My timescales and symptoms are IDENTICAL to yours except mine is the right side. I went privately to a GP on 13/10/2019 - by 17/10/2017 I had a “suspected” diagnosis from Gibb.
I did some research to find a consultant that was not autistic like Gibb. Found Ashwin Pinto. He gave me a firm diagnosis in early November 2017.

private GP = £90
Neuro exam = £275 two of those
MRi scan = £350
Bloods = £500
EMG/NCT = £165 plus £90 for use of gear at the QA.

I had to get another job to pay for private healthcare and all the gear I have had to buy. You try getting a job when you have MND, working at home !!! - I did it though����


I had to retire early in January 2017 because I was so tired. And I did my own differential diagnosis during the summer 2017 to eliminate all the easy things - diabetic neuropathy, stenosis, B12 deficiency, Lyme disease, radiculopathy, perpheral neuropathy, SA, etc. etc.

Is your urine darker than it used to be?

[AndyM]

Yes Andy,
Ashwin took about an hour to do a full neuroexam. I think you have limb onset ALS from what you describe, but I can’t see your fascics. Chronic neurogenic changes is just a generic term- meaning your EMG signals are wrong.
Some consultants do not want to give a definitive diagnosis, or rubbish like “suspected ALS” “working hypothesis”, this is because they are cowards or don’t want you to qualify for a PiP on a DS1500. Trust no one and Everbody Lies - Dr House.

I think you have seen Bill Gibb privately?He is an idiot

The woman neurologist is Georgina Burke?

I am convinced I have it but 4 Neuro's say no -yes saw Gibb -what a waste of time he told me it was all in my head , I am due to see Neurologist I saw privately last summer at Southlands in Shoreham but this time under NHS , he was adamant I did not have MND but symptoms progressing and I am getting no answers -have had 4 Neuro exams including one at Southampton Neurological centre ,can I ask how long it took for you from symptom onset to diagnosis?

I have spoken to my wife and she suggested that you come and see us and we will get you up to speed with knowledge, and who to see to get a firm diagnosis. My wife is now MND expert with skills way beyond any help you will get from the so called “multidisciplinary team” - the neuro OT team is truly ghastly. Solent NHS is the worst in the country for neuro and mental health provision.

Yes Andy,
Ashwin took about an hour to do a full neuroexam. I think you have limb onset ALS from what you describe, but I can’t see your fascics. Chronic neurogenic changes is just a generic term- meaning your EMG signals are wrong.
Some consultants do not want to give a definitive diagnosis, or rubbish like “suspected ALS” “working hypothesis”, this is because they are cowards or don’t want you to qualify for a PiP on a DS1500. Trust no one and Everbody Lies - Dr House.

I think you have seen Bill Gibb privately?He is an idiot

The woman neurologist is Georgina Burke?

[AndyM]

Did they diagnose you?

[AndyM]

Really hard not too Ellie with so much going on in my body -thank you again x

[AndyM]

Yes I can

Hi, I live in the same area as you: get to see Ashwin Pinto for a diagnosis, and Louis Merton for EMG/NCT. Can you still walk?