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Thread: Not yet diagnosed but struggling...

  1. #1
    Forum Member
    Join Date
    Feb 2018

    Unhappy Not yet diagnosed but struggling...

    Hi all,

    Apologies in advance as I've not yet been diagnosed and I really do hope and pray I am only a temporary member here. I'm not looking for opinions on what I have, as I do have a neurology appointment next week, and am really looking for some support.

    I'm 29, originally from the UK, currently living alone and working in Aus. I do work in the medical field. Normally very active - weightlift 3 times a week (I am pretty strong for my weight and lean), am up to scratch with my nutrition and ran 10km for the first time before all this hell broke loose.

    I began developing heartburn for the first time 2.5 months ago (granted my eating habits aren't great) then I noticed a lump in the throat feeling and trying to clear my throat. I also noticed a couple of times I stuttered to get a few words out at the end of a sentence. I then went to Vietnam for a week where I developed diarrhoea for a day and swiftly got over that (probably not relevant).

    Since then, while my heartburn (under control with omeprazole/gaviscon) and throat symptoms persisted, I've gone to develop new symptoms, one after another (when I hoped they would just go away...):

    - Swallowing: thin liquids have become a major problem, particularly with saliva. I struggle to lie flat as I've had moments where I can feel it trickle to the back of my throat and then I'd have a coughing fit. More concerning, since 1 month ago, I've noticed fluid come up the back of my nose and my left ear gets blocked every so often. I've seen ENT who examined my throat, and did a barium (non-modified, so didn't test thin liquid) swallow which was normal, and has since discharged me but said the regurgitation did sound "neuromuscular".

    - Speech: I'm straining more to be heard and I get pretty breathless at the end of a sentence at times. Having recorded my voice and compared it to before it sounds more "nasal" than before. I'm shortening conversations with my colleagues as a result.

    - Weakness: 1.5 month ago I noticed that one of my toes wouldn't curl to the same extent as my other toes. 1 month ago I noticed my left ring and pinky fingers become weak. 1 week later this progressed to include my right side (I just woke up with it - didn't do any gym work and haven't since). No pins and needles etc. Probably a bit too early to notice any muscle wasting at this stage. Past 2 weeks I notice my legs getting weaker (nothing specific I can pinpoint at this stage). Now I'm shaking all over and have noticed more difficulty/weakness in, opening taps, turning a steering wheel, and especially playing the guitar. Had an MRI brain and C-spine this weak which was normal.

    - Fasciculations: I've dealt with this since my teens (mainly over my legs as I've had back issues in the past), but over the past 1 month they have become more widespread, visible and "violent", though not persistent.

    - Fatigue: I get moments during the day where I, rather inexplicably, just feel very tired and exhausted which can last for an hour or two before regaining some focus. For example, I've just come back from routine grocery shopping, and I feel burned out.

    I can't believe how fast things are progressing. I'm actually taking sick leave at the moment as I am physically (rather than mentally) am not feeling able to work through a week of night shifts and have my neurology appointment next week (a 4 hours drive - missing the NHS back home!)

    As each day goes on and each symptom develops I'm feeling more certain it's MND, but as I'm typing I really feel lonely going through all this.

    My family are aware that something "serious" is going on (they initially told me to catch the next flight back to UK and so on) but I'm more worried about the financial and emotional impact on them, as I am currently on a very good income (but sadly have no life/crit illness insurance in the UK) and have found out that I have life insurance as part of my job here in Aus. Yes, I may be jumping the gun here, but I've always been a "planner" and am trying to remain rational.

    My family have sacrificed everything they had to get me to where I am, and the thought of having to give everything up, where I hoped to look after them when I return, and to rely on them really breaks my heart.

    When I'm with friends and colleagues here I've been OK and nobody seems to have noticed me looking or being different, but inside I know my body is falling apart.

    If anyone has made it this far reading my rant, I applaud you! And my sincerest apologies for taking up your precious time when we all have lives we should be living. I just don't know what else I should be doing in the meantime.
    Last edited by Jaycee; 10th February 2018 at 11:19.

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi JC,

    Sorry you're struggling.

    I have to agree with all the replies you got on the US forum regarding your symptoms - they aren't ALS/MND-like.

    I hope you get answers from your doctors soon.

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

  3. #3
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Hi JayCee You seem to have a load of stuff going on, but most prominent is extreme anxiety over different issues including lack of UK insurance and letting people down. Taking the information you have offered, I am sure it is not neurological, maybe fatigue or anxiety. Do you take steroids. Stay positive. Dude xo
    p.s. I know you stated you didn't want a forum diagnosis, so the fact that I am posting a reply should, I hope, give you further reassurance.
    Last edited by Dude; 10th February 2018 at 17:21.

  4. #4
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi JC,

    Sorry to hear your story and hope that they finď that its something else which it could well be.

    We do have a couple of people from Australia that post from time to time.

    Hope you find an answer soon and you can say goodbye to the forum.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
    Forum Member
    Join Date
    Oct 2017
    Hi Jaycee, Sorry to read your story, have you tried contacting the Australian MNDA, I'm sure they must have contact numbers like we have here in UK. Talking to them will probably help, have spoken to various people from MNDA here in UK and they are all very understanding and helpful. I can't see them being any different over there.

    Very best wishes, Pete

  6. #6
    Forum Member
    Join Date
    Apr 2017
    Dear Jaycee
    Love to you and I hope you get definite diagnosis from neurologist. Don’t worry about family - they will support you and not feel that you have disappointed them.
    All best wishes
    Roadahead x

  7. #7
    Forum Member
    Join Date
    Nov 2017
    Hi, sorry you are so worried, you probably have done this a million times but have you logged into symptom checker if you get it over there, it is the first place I went to when I needed a possible diagnosis, good luck.

  8. #8
    Forum Member Pinkelle's Avatar
    Join Date
    Feb 2017
    I feel for you. Its the not knowing that is sometimes the worst. Your family will be there for you and I'm sure they won't feel like you have let them down!! Good luck x

  9. #9
    Forum Member Streetwise's Avatar
    Join Date
    Dec 2016
    I can tell you I've had your problems and it's a mixture of severe anxiety and asthma from severe anxiety which can turn into panic attacks and an undiagnosed transient ischaemic attack which affected the left Side of my body and give me radial nerve paralysis the paralysis went away but left nerve damage down my left side no my left side is getting weaker I don't get a lot of fasciculations but I do sometimes get slightly more aggressive ones not as aggressive as motor neurone disease

  10. #10
    Forum Member
    Join Date
    Feb 2018
    Hi all, thank you for all your kind and compassionate replies.

    The finance/letting people down was really an aside from my symptoms that I really wanted to get out of my chest. I have since not really thought about that. Nope I don't take steroids.

    I'm open to forum diagnoses and I've used symptom checkers (if anything that reinforces my suspicion still)

    Unfortunately my appointment with neurology has been delayed until next Thursday. I've taken the past 10 days off work to see if things will improve but unfortunately they haven't. All the energy I could muster is to eat, do the odd gentle walk (feel a constant ache over my quads even though I've not worked them out, though haven't fallen thank God), and sleep... loads.

    I've noticed over the past week I've been sleeping significantly more than before (usually a 6-7 hour guy, but now more like 10-11) and when I wake up I still don't feel refreshed (though no headache). In fact, if I didn't will myself to get up I reckon I could sleep all day.

    Worryingly, once I stand up that "fuzzy" feeling went away very quickly. I've noticed when I put my hands on my chest that it genuinely doesn't expand much at all when I lie flat compared to sitting up/standing. I'm now thinking this has spread to involve my respiratory muscles...
    Last edited by Jaycee; 17th February 2018 at 03:01.

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