Hello I was diagnosed early November 2019 with ALS I had originally gone to the GP because of cramping in my hands and difficulty in using a knife and fork, laces and buttons, and more importantly I was losing my grip when playing golf.
My introduction to this was not good. I wasn't expecting the dreaded words, as previously it was just thought I had trapped a nerve.
So after being told i went home and waited for confirmation and some idea of what happens next. After two weeks of nothing I went back to the GP, who had no idea and had to find details through medical records. Another 2 weeks,still nothing (I was probably hoping it wasn't true) so I went to the hospital and discovered that although the letter had been written the same day ,marked urgent, the admin department had just done nothing with it.
2 hours later I got a phone call from physio and appointment made . This week I have received an appointment for respiratory clinic. And follow up appointment with consultant at the end of the month.
I have been back to the GP since and had explain shared protocol as that hadn't been done either Please tell me this is not normal.
On a positive note my physio is lovely ,have had 4 sessions with her and she works through each new ache.
My family and friends have been very supportive and we are enjoying life, cruise booked, theatre tickets bought, and with my oldest friend have set ourselves the target of having a pint in every pub in my home town, 15 done about 120 left to do.
I mentioned golf earlier, I have a 4 ball team ready and willing to play in any charity days, ( south West , midlands,
Thanks for reading
My introduction to this was not good. I wasn't expecting the dreaded words, as previously it was just thought I had trapped a nerve.
So after being told i went home and waited for confirmation and some idea of what happens next. After two weeks of nothing I went back to the GP, who had no idea and had to find details through medical records. Another 2 weeks,still nothing (I was probably hoping it wasn't true) so I went to the hospital and discovered that although the letter had been written the same day ,marked urgent, the admin department had just done nothing with it.
2 hours later I got a phone call from physio and appointment made . This week I have received an appointment for respiratory clinic. And follow up appointment with consultant at the end of the month.
I have been back to the GP since and had explain shared protocol as that hadn't been done either Please tell me this is not normal.
On a positive note my physio is lovely ,have had 4 sessions with her and she works through each new ache.
My family and friends have been very supportive and we are enjoying life, cruise booked, theatre tickets bought, and with my oldest friend have set ourselves the target of having a pint in every pub in my home town, 15 done about 120 left to do.
I mentioned golf earlier, I have a 4 ball team ready and willing to play in any charity days, ( south West , midlands,
Thanks for reading
I enjoyed playing a round but was never great. The hubby and I had great dreams of playing golf in warmer climes after retirement - our plans are different now, obvs 
It comes up on the Forum too often.
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