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Test subject me thinks

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    Test subject me thinks

    So since being diagnosed with limb onset als I've been put through a lot of tests. Having met my consultant once where I was diagnosed I then had bloods taken issued with rulizole full body MRI, lung function test and a blood test after 4 weeks of the tablets. Yet I haven't had any feedback from anyone regarding these tests. Why's that am I just another patient to get tests done on? I feel like a Guinea pig. Or maybe a mushroom.

    #2
    Stevedp It's good practice to get baseline tests done shortly after diagnosis, so that accounts for the bloods and respiratory testing.

    Not a Scooby as to why you needed a full-body MRI 🤔

    When is your next appointment with the Neurologist? 3 monthly is kind of normal. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Stephen had tests in January and April but still no results.
      when i can think of something profound i will update this.

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        #4
        Stevedp Having only seen the neurologist once to confirm diagnosis, I have been told there are now no future planned appointments.
        As for the blood test because of riluzole, after 5 months I called the GP to ask about it and they said I wasn't down for any blood tests. They eventually booked me an appointment and when I got there was told they couldn't because they didn't know which test! They did a liver and kidney test in the end but like you, I haven't heard anything.

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        • Have the neurologists any idea of what MND you have Steve?

          Limb onset only describes the way it affects you. Ask if it is genetic, UMN or LMN and how the neurones are compromised?

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            #6
            Thank you will be chasing it up. I will ask those questions

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              #7
              I’ve always been told that no news is good news, but that being said, they do forget about us sometimes.
              Recently my OT said she was closing my file…? I was very surprised, as my condition is deteriorating and we are having to start a main floor renovation. The walker is becoming too difficult and I’ll likely need to look into a wheelchair.
              I guess according to my OT, I’m cured! 😂😉🙈🤞🏻

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                #8
                They cancelled Stephen's referral.

                Stephen saw 2 neurologists. He was diagnosed with ftd. Hes had a couple of questionnaires and that was it.

                I guess he's cured.

                To be honest God help anyone left on their own to deal with this.

                🤷‍♀️
                when i can think of something profound i will update this.

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                  #9
                  Originally posted by denise View Post
                  They cancelled Stephen's referral.

                  Stephen saw 2 neurologists. He was diagnosed with ftd. Hes had a couple of questionnaires and that was it.

                  I guess he's cured.

                  To be honest God help anyone left on their own to deal with this.

                  🤷‍♀️
                  You have to do a lot of chasing around and pushing - regardless of how you feel or how impacted, particularly if via a provincial hospital - musculoskeletal referral Nov 2021, EMG etc. March 2022, clarification Aug 2022 (first ambiguous symptoms undetermined Dec 2020) and no actual support or monitoring up until now!
                  Finally now got a referral date for a regional centre / MDT...
                  2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                  Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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                    #10
                    Stevedp was it at the QE? I was also diagnosed there. I was diagnosed 15 months ago and that was the last time i saw my neuro in clinic.

                    One thing I would check is that your gp will prescribe your riluzole. I had a right game as my gp argued with the QE about it.

                    My gp printed off lots of blood forms for liver blood tests and I basically booked them myself. maybe email your mnd nurse.
                    Diagnosed May 2021 bulbar onset als.

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                      #11
                      Yes it was QE I am being prescribed by my gp. They said they will do my bloods 4 weekly.

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                        #12
                        My husband has three monthly liver function blood tests whilst-taking Riluzole at the surgery, where he is prescribed Riluzole. They tx me to make appointment for his bloods. We’ve never had any problems 😊xx

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