Did they diagnose you?
Not diagnosed but concerned
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Guest
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?Last edited by Guest; 1 March 2019, 08:14.
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Guest
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.
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Originally posted by jonboy53 View PostYes 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?
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Guest
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?Last edited by Guest; 1 March 2019, 09:12.
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Originally posted by jonboy53 View PostMy 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?
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?
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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.
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It sounds like you have dismissed radiculopathy - because you would have numbness/loss of sensation on your left side and no fasciculations
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I am seeing Neurologist two weeks Monday that I initially saw Privately -got to travel to Shoreham but seeing him under NHS ,got my GP to do a referral to my local hospital and got letter this morning to say that they have declined referral - going round and round in circles , You say your symptoms were right sided ,when did you first notice muscle loss?
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