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Now I’ve got an appointment on 27th March at cardiorespiratory for a sleep study test.
There should have been a leaflet too but that is missing
Changed to 10th April. Still no leaflet but we asked about posting the test back and that is only done if the test was requested by a GP. There is no way my wife can get to Salford Royal and back in rush hour traffic and still get into work so returning the test may be problematic
Now I’ve got an appointment on 27th March at cardiorespiratory for a sleep study test...... we asked about posting the test back and that is only done if the test was requested by a GP.
I have been involved in this game as my neurologist wanted a baseline for my breathing, so they could notice when it changed. I had 2 tests and both involved getting the unit back to the testing people at Kings in my case after the test.
I am lucky as my wife works there and she was able to drop the unit off on her way into her own unit, which set me wondering as to whether you might have a neighbour who works in or near the hospital?
Warmly
Andy
Warmly
Andy
Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association
"Things turn out the best for people who make the best of the way things turn out"
Hi Dis, I was at the clinic in Salford this afternoon. When they weighed me it seemed that I had put on 18 kg! My body is telling a different story.
Did you know that they have a Meet and Greet system at Salford Royal? They have a group of volunteers, one of whom will meet you at your car or taxi and then they will use one of the hospital wheelchairs to take you to your appointment. When you have finished at the clinic, the staff ring through for one of the volunteers to collect you.
Dina
Trying to keep positive, but not always managing.
Indeed Barrie and Ellie but all initially said was a different dietician would be in touch.
They were more about genetic counselling as I was told I have the C9orf72 mutation
The other problem is an increase in CO2 level in my blood so the idea is to be an inpatient to try the mask mechanism and if that works a PEG could follow
Which consultant did you see? I saw John Ealing, plus his two students. I was quite late going in but it didn't matter as he always gives the time you need. We were also talking about Salford and Wythenshawe and I now have an appointment with Dr Bacari (?) on 03 July about my breathing, before I can have my PEG fitted.
It was kind of Kathleen to stay with you. She was telling me yesterday that her husband was one of the founders of the organisation.
It's a shame we didn't know we were both going to be at the clinic, we could have had a chat.
Dina
Trying to keep positive, but not always managing.
I have the C9ORF72 faulty gene too Dis.' I go to Salford Royal MND clinic too to Amina Chaouch's clinic. My next appointment is a Wednesday afternoon in August. My husband now pushes me from my motability car that's parked with luck in a disabled bay but when not available he parks me in the foyer from the drop off point and then goes to find a parking space. A bit off topic, sorry. Lynne
ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
I'm staying positive and taking each day as it comes.
The other problem is an increase in CO2 level in my blood so the idea is to be an inpatient to try the mask mechanism and if that works a PEG could follow
Douglas, did you ever get to do the sleep study? I know the date was changed a few times but you had a date of 22nd May but obviously that didn't happen or it did and, based on the test results, they think you'll benefit from using non-invasive ventilation (NIV) and will give you a BiPAP machine, the most popular brand being 'Nippy'.
Either way, it's good to have the inpatient back-up when first using NIV and you may even get a feeding tube, given you're there anyway. Have you a choice of hospital or are they two different admissions? I didn't really understand that bit
Don't let them forget about your weight loss - that's really important!!
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