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    Hello from Cheshire...

    Hi, I'm Dan in Cheshire.
    I've been given an "Interim diagnosis of limb onset ALS".

    I've had some 'odd' muscle aches and nerve type sensations since about December 2020, as well as quite a bit of fatigue (I also have Crohns Disease, but this 'fatigue' seemed different from over the previous decade of various episodes relating to Crohns).

    In November 2021, I woke up one morning with a very weak left hand (couldn't squeeze toothpaste, hold a mug, pull a zip or turn a key - all the positional and sensory functions seemed fine, just no strength).
    Noticed some hand atrophy - particularly between thumb and finger.

    Was referred to a hand specialist and was suggested as Cubital Tunnel Syndrome (with some atypical symptoms) and after left arm nerve conduction and EMG tests, was pencilled in for Ulnal Nerve Decompression surgery.
    (During the left arm electro tests, I asked about the right arm sensations I'd also been getting "That's not on my list, has anybody checked your neck?")

    5 days before potential left arm local nerve surgery, I had relatively sudden slight muscle atrophy around my right arm elbow.

    G.P. referred to a musculoskeletal unit, they did various physio tests, requested an 'urgent' MRI scan of neck.

    Was waiting weeks for MRI scan, so booked a physio assessment, they observed various atypical reflex responses and emailed my G.P.
    I pushed for a Doctor's appointment, as further right arm elbow / lower right arm atrophy had occurred, as well similar pains / sensations to my arms the last year, now happening in my lower right leg and both feet.

    Doctor felt MRI wait was unreasonable and because I highlighted local left arm adverse electrical results when suspected (not unreasonably) Cubital Tunnel Syndrome a few months before and now similar visual atrophy in other arm - a neck MRI scan would at least give a direction of undetected spinal problems, else we realistically have to consider serious neuromuscular degenerative illnesses, due to electro results on left arm.

    Was regerred / admitted to local large hospital that day into an acute assessment unit, a Neurologist from Walton assessed MRI scan, with no spinal concerns, didn't think it was MS and would have book me into The Walton Centre for additional electro tests soon, as well as blood tests that day.
    I showed him my latest physio assessment when he did my reflexes and their 'adverse' observations, I had also done a Lyme Disease blood test from an acredited laboratory (as I'm potentially higher than average risk) and that was negative / normal.

    All over limb and tongue base EMG testing at The Walton Centre, Liverpool 8 days later and subject to some additional caveats, the Interim diagnosis.

    My G.P. also indicated a range of additional support resources they will review / initiate in a few weeks time.

    Meanwhile, I've been doing a lot of legwork ensuring measures are in place for when additional legal, financial, medical support and intervention are required, as well as checking my previous employer's pension criteria.

    I'm 53 with no children, but have still had to have some deep and challenging conversations with extended family and close friends.
    ​​​​l'm finding that compartmentalising practical / emotional / interpersonal considerations and at times rationing my time on them is helping mentally for the way ahead.

    I left mainstream employment (sci & eng) 8 years ago due to Crohns disease problems and set up a small conservation business, where I don't have to work 'normal' hours.

    Obviously I now have quite a few things to consider and the next Consultant's appointment should bring a bit more clarity to the journey ahead.

    Interestingly, I also have an unusual high childhood Lead exposure risk from Chester's historic leadworks (documented in a 1980s BMJ survey), as well as occupationally with Lead solder in electronics repair and Tetraethyl Lead instrument and control systems in the days of Leaded petrol processing at refineries.
    (Lead, particularly in children being a recognised neurotoxin).

    Trying to get a lot of the practical considerations for the future mapped out early, as well as parking and prioritising important / unimportant stuff.
    eg. Halted some previously planned alterations at home, as my house (bungalow) is small, but could easily be gutted and adapted should I need mobility and accessibility alterations in the future.

    I've also decided to upgrade to a decent fitness watch, to monitor background health, as well as a pretty intensive professional sports physiotherapy massage every couple of weeks, so as to monitor and record overall muscle condition, assist circulation and lymphatic system (as well as being an opportunity to zone out from everything).

    I did have concerns back in November when I had the local left arm issue and for family history reasons considered that the risks could go this way.
    Last edited by Arcadian; 5 April 2022, 07:18.
    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)...

    #2
    Hello Dan

    sorry to hear you are going through all of this. Hope for you the final diagnosis may not be anything MND related. But you seem to take on the chin whatever life throws at you. That will certainly help with what may come. I for my part have had my diagnosis (ALS) already and are now slowly preparing and sorting things out for the time when I may not be able to do so anymore. I too am a member with Dignitas in Switzerland for the time when things go down south.

    stay strong
    Marc

    Comment


      #3
      Welcome Dan.

      Originally posted by Arcadian View Post
      All over limb and tongue base EMG testing at The Walton Centre, Liverpool 8 days later and subject to some additional caveats, the Interim diagnosis.
      You certainly have extremely atypical onset if it is confirmed as ALS, which leads me to ask what those caveats are?
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Hello Marc,
        Thanks for the reply. I had a health scare about 12 years ago when I found out I had Crohns - but the wait between scans, biopsies and results really caught me out at the time, as cancer had been the main concern for symptoms that time.

        Strangely, the initial slow build up this time, then the faster pace of recent other diagnostics each coming back negative and knowing a local test on one arm already indicated neuromuscular issues had me a bit more prepared / resigned, once ayrophy, fasciculations and other problem things started.
        Also it's given me a bit of a drive to push at a few things, to ensure as many things that potentially affect others around me are right and less challenging for them as things progress.

        I'm finding I get emotional sometimes at nice things with others, as it's usually a happy and fulfilling circumstance and I'm generally content, so indifference rather than anger at things that aren't so important in the grand scheme of things.

        A local solicitor practice has been excellent in balancing professionalism with sensitivity and empathy and not making things miserable for Will, LPoA, future care considerations, etc.

        A 'Daniel Manual' preparation has not been as challenging as I thought it might be, to keep things as clear and sorted as possible and helps get a few bits of information at hand early for how things may progress.

        With having Crohns for years, I'm almost at 'activist' level of disability and access issues, where artificial and system barriers make other folks lives unnecessarily more challenging, so always try to point out issues to stakeholders and 'gatekeepers' where positive intervention and a bit of thought can make other folks lives more comfortable.
        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)...

        Comment


          #5
          Hi Dan
          You sound like you are dealing with things in a methodical way, which is good at this early stage
          I'd agree with Ellie that your onset seems very atypical, have they ruled out degenerative muscular conditions at this point (as opposed to neurological)?
          if your diagnosis is confirmed, then there is a wealth of support here and many people, myself included, who live with this condition, albeit with challenges, for much longer than the 'average' predictions. Stay positive.

          Comment


            #6
            Cheers Olivia,
            The nerve function problems (nerve conduction tests, EMG) were already confirmed during the left arm local issue. Then, when visual atrophy in my other arm went through other diagnostic exclusions, was repeated at a larger hospital specialising in neurological issues.
            I didn't list all the other symptoms quite in the order of build up (arm tremors, involuntary clawing of hands / fingers, fasciculations elsewhere, partial paralysis, some balance / stumbling issues, position matching aspects).

            I do have some unusual historic environmental / occupational related additional risk inputs, as well as potential genetic aspects and having existing autoimmune illness issues. Additional effort is being made around this.

            Present interpretation of limb onset ALS is from my GP and hospital Neurologist together and in agreement.
            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)...

            Comment


              #7
              Welcome to the forum Arcadian look forward to reading more posts from you.

              This is a good space to discuss anything & everything.

              👍😉
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

              Comment


                #8
                Welcome Dan.6h No matter how dark it gets we will always provide light. 🕯️👍😁😎xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  I had another hospital Neurologist consultation 2 weeks ago.
                  He feels my symptoms "sit within the family of motor neurone diseases, but with some ambiguities".

                  A spinal fluid sample is desirable, as well as further neuromuscular tests, particularly at The Walton Centre regarding resources, compared to locally.
                  Nerve biopsy tests were also a consideration.

                  Formal diagnosis may take further weeks or months, depending on indications from additional testing, as well as simpler indications visually over time of progression (which is happening slowly with additional limb muscle areas over about a month).

                  With having other serious medical conditions that can overlap with neuromuscular problems, genetic aspects were mentioned as an area of interest.

                  Reflex responses were checked again, as well as some functional safety aspects and questions regarding driving.
                  Without a formal diagnosis yet, DVLA was mentioned as being a future communication, rather than immediate concern, (with obvious duty of care considerations by myself too).

                  Recently in hospital for other unrelated issues as a day patient, my medical notes mention:-
                  "Under Dr. xyz at abc Hospital for suspected motor neurone disease"

                  What has been both fascinating and helpful, has been a couple of friends 'sensitively' talking about relatives who have / had MND and sensible and practical observations around that.

                  My GP also outlined their framework of future care considerations and connected team of specialised areas dependent upon progression.
                  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)...

                  Comment


                    #10
                    Arcadian Sorry you have ended up here, but you’re very welcome. You certainly do sound well organised, and preparing for all eventualities can only help. Hopefully you’ll have a confirmed diagnosis of whatever it is very soon.
                    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                    Comment


                      #11
                      Thank you PeterPan and for your blog which is extremely helpful (and certainly similar to my outlook regarding practicalities, planning and formalities at the earlier stages).
                      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)...

                      Comment


                        #12
                        Arcadian hi. Hoping you get more answers soon. Re genetic testing i had gene tests for 2 other rare diseases. It took about 4 months for the results.
                        there are so many rare conditions out there.
                        Diagnosed May 2021 bulbar onset als.

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