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How Long To Wait For MRI Results

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    #16
    mywife and I shop online Sainsburys and Tescos are really good - quicker than the Normandy invasion in wheelchairs

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      #17
      I second that about the convenience of online grocery deliveries. It is nice to get out and about and to pop into some shops, but I find it much easier to get the weekly food shop delivered - usually by Morrisons or Sainsburys.

      Kayleigh x

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        #18
        hi
        thanks everyone
        yes we do online shopping, its a big help
        but sometimes paddy just wants to get out
        i think he gets stir-crazy being stuck in,
        love
        emma x

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          #19
          Hi Emma,

          I agree it's good to get out and about, if we can. Although I get a weekly grocery delivery, there's always a few bits and pieces that I need to pop out for. I expect that you have developed very strong arm muscles, especially with the lack of drop-downs when you go shopping!!

          Kayleigh xx

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            #20
            I know about the lack of dropped kerbs in and around Bury. My husband and my daughter have pushed me but not as far as Asda. We've stayed around The Rock which is bad enough. Dial-a-ride will pick up and drop wheelchair users and collect and take home at a predetermined time. I haven't used that service but have seen others do so. 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.

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              #21
              I can sympathise with you both Emma and Lynne - too many high kerbs are a problem where I live as well.

              I think that the lack of dropped kerbs is probably a nationwide problem.

              If representives from each local council had to go out in wheelchairs to assess how difficult it is for wheelchair users to get around, then they might realise how problematic it is to negotiate so many high kerbs - and then maybe there would be more of the dropped down variety!

              But, I think it is more likely that someone will invent a wheelchair that hovers above ground and above kerbs, than that happening!

              Any good inventors out there? - I am sure that the ' hover- wheelchair' would be a great investment opportunity for a 'Dragon' on TV programme 'Dragon's Den'!

              Admittidly, science isn't my 'thing' and It may sound like a 'crazy-Kayleigh idea' - but how about the hovercraft being adapted into a wheelchair version? - you never know - sometimes ... where there's a will (or wheelchair), there's a way!

              Kayleigh x
              Last edited by Kayleigh; 14 January 2019, 00:19.

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                #22
                lynne
                thanks for the info for dial a ride, will look into it
                dont mind the rock area, and the millgate pretty flat, but the rest of town is hard work
                love
                emma x

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                  #23
                  hi everyone
                  another update for our diagnosis saga
                  just got a letter from, salford royal, asking paddy to go back for more MRI scans
                  as the original cervical and and thoracic scans wasnt clear enough (whatever thats means)
                  so its booked for the 14th of feb, does this mean i go to the end of the queue
                  and need to wait up to 8 weeks again to find out
                  sorry just so frustrated
                  love
                  emma x

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                    #24
                    Were they contrast images Emma? As in did Paddy have to drink a special drink before his MRI?

                    If not, they may want contrast images or maybe he moved slightly.

                    Either way, it does happen that images are not clear enough and need repeating.

                    You should ask (plead!!) at the 2nd scan for the results to be expedited - all they can say is No.

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                      #25
                      hi Ellie
                      thanks for replying so quickly
                      no he didnt have a contrast image
                      maybe paddy moved, as he was really agitated during the scan
                      the original scan was in a mobile unit, there was no care or comfort, (outside tec staff not normal hospital staff)
                      there was no room for his wheelchair, they had to drag him on the bed
                      and then left him them in complete silence for over a hour
                      one good thing is he dosent have to take brain scan again
                      maybe because his head was in the cage keeping it still
                      i will ask them to see if they can expedite result
                      love
                      emma x

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                        #26
                        Hi Emma,

                        Hopefully the scan results will be with the neurologist in advance of Paddy's appointment on the 28th, and ideally, if necessary, the neurologist's secretary will chase up the results to make sure that they are received in time.

                        When I went for my MRI scans I told them when my follow-up appointment was so that they knew when my neurologist needed the results by. Also, I phoned my neurologist's secretary a few days before my appointment to check that the he had received the results (in case the Secretary needed to be politely 'prompted' to chase them up).

                        I hope that Paddy's appointment on the 28th will not be rescheduled, because he has waited long enough for an appointment as it is.

                        Best wishes,
                        Kayleigh x

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                          #27
                          hi kayleigh
                          the problem that we are having, is that our GP
                          wanted paddy to be seen asap

                          so he sent a referral to both the neurosurgeon and neurology
                          neurosurgeon saw paddy first, and it was he who asked for the original MRI scans in december
                          in the meantime neurology contacted me for appointment for end of feb
                          so paddy hasnt got a neurologist just an appt
                          so im not sure if both the departments are talking to each other
                          or its a case of the left hand dosent know what the right hand is doing
                          but we are still in limbo
                          the only positive thing is that finally the GP ordered a rake of blood tests
                          which paddy had done today (the first bloods since it started last july)
                          love
                          emma x

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                            #28
                            I saw the second neurologist after the first (who I saw at Fairfield Hospital) discharged me about 11 months previous. The second one was much better and sent a referral to get me a head MRI and the second appointment with the result and diagnosis sent me a referral to the regular MND clinic with another neurologist. I got two appointments shortly after. One for each. I went to the clinic and met the lovely neurologist Amina Chaouch. I told her that I had an appointment also for the other neurologist. She suggested that I cancel it to give somebody else a chance. I was happy to do so. I've been very happy with Dr Chaouch. 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.

                            Comment


                              #29
                              Hi Emma,

                              I don't think that the NHS could make the situation much more complicated if they tried! I can see that it is not straight forward for you to know who to speak to about results and appointments etc.

                              If I was you, I would take a photocopy of the appointment letter (about the appointment on the 28th Feb) with you to the MRI scans, so that they know when the follow-up appointment is and can put the copy of the letter with Paddy's paperwork. Hopefully, this would prompt someone to get the results to the relevant person at the hospital, well in advance of the 28th. (Or if you can't take a photocopy of the letter with you, perhaps take the original with you to the scans - for them to see confirmation that Paddy has already got a follow up appointment booked).

                              Kayleigh x
                              Last edited by Kayleigh; 18 January 2019, 15:52.

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                                #30
                                I hope that getting the results of Paddy's blood tests will be more straight forward! Hopefully, the GP will get the results quite quickly, just in case they do flag up any causes for all or some of his symptoms.

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