Advice on process of diagnosis

[Hairbsb]

Thank you @MaryC I think I will have to insist at the hospital that my husband is allowed in but the security guy stops people coming into the hospital without an appointment.

[Ellie]

I got told of my diagnosis on Tuesday to be confirmed after anti body tests

Antibody tests for what?

[Hairbsb]

Something gravis

[richard]

I think I will have to insist at the hospital that my husband is allowed in but the security guy stops people coming into the hospital without an appointment.

May I suggest that you tell security you have a disability and your husband is your carer.

[Hairbsb]

Excellent thank you so much richard

[Suefromwakey]

After 2 years of falls, not being able to brake the car and drop foot on one side Albert finally got to see a consultant, it took a further 22 months before he was diagnosed in Feb 21, it might be because he has the slow version so was more than difficult to diagnose - it was torturous,

As I recall the tests he undertook during the 22 months were 3 EMGs, Muscle biopsy, many many bloods, lumbar puncture, CT scan, 2 MRIs, probably some things I have forgotten - after each test he was told he didn't have MND, looking back that was an appalling thing to tell him as it used to gee him up for a few days only to be knocked right back down again

I can date his first drop foot signs to 2016.

[Hairbsb]

Agreed the young neuro I saw first said ' you are too young for MND . I thought don't say that because it could be

[Hairbsb]

I'm trying to think what to eat for lunches as I find eating chicken a bit difficult. I need things that are easy to swallow. I can only think of soup.

[Hairbsb]

One of my anti body tests come back as negative (bad news) awaiting the final one to see if something is attacking my system . Sorry not very good at relaying info . I have been told it is highly unlikely to be something gravis but I am a human and continue to hold out hope. Then the hard hard task of telling my children only 19 and 23. Feel quite ill right now on bus going to work somehow

[Rosemary6NT]

One of my anti body tests come back as negative (bad news) awaiting the final one to see if something is attacking my system . Sorry not very good at relaying info . I have been told it is highly unlikely to be something gravis but I am a human and continue to hold out hope. Then the hard hard task of telling my children only 19 and 23. Feel quite ill right now on bus going to work somehow

Sorry to hear that x

[Hairbsb]

Thank you Rosemary6NT just needed to share x

[TinyLady]

Sorry the news isn't better Hairbsb - my children are 16 and 18 and I dreaded telling them, but it went better than I thought it would. Sending gentle hugs xx

[Hairbsb]

TinyLady thank you so much . I am not going to cry (too late)

[TinyLady]

I've just had someone come to see about fitting my through floor lift... he wanted to put it from my garage to the middle of my bedroom, in front of the window... weirdly I declined... how odd would that look?

I'm not ready to trash my beautiful house for this condition. (I'm trying to make you smile, but probably failing miserably). I find out next Monday if my diagnosis is "confirmed", but think we know already and I'm still shedding tears, no harm in that xx

[Hairbsb]

TinyLady when you declined what was their response? I am with you and thinking of you for Monday. What time is your appointment if I may ask. X