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Thread: Limbo Land

  1. #11
    Hi again,
    Well I went to my local dr and they said the Mri was fine, no lesions, no atrophy, etc.
    Also the blood test for Issacs was negative.
    I am having more speech problems, and feeling more weak in legs and arms more on the left side.My left leg drags as I walk any long distances,
    As the list of other things are getting ticked off I am wondering what else this could be.

  2. #12
    Having a sit down with your GP and getting them to try to explain the tests while you are waiting for your next neuro appointment is a good idea. I am off to do that this morning
    Unfortunately the diagnosis process seems to be very drawn out for neurological conditions, I have been stuck in limbo between two diagnosis since December. Motor neurone disease or Multifocal motor neuropathy, but more symptoms have shown up over the last couple of weeks so back to the GP to check things out whilst waiting for hospital appointments.
    It really is a process of elimination, all you can do is chase up the next lot of steps and ask lots of questions.
    I hope they find some answers for you soon

  3. #13
    Just needing a little vent,
    I have spent lots of $$$$ on a neurologist to say he doesn't really know what is going on with my body, He sent me back to the auto immune specialist who said I need another opinion. So now waiting for next Neuro.
    My regular dr has said I have both upper and lower motor neuron involvement.
    My left foot drops if I walk more then 10 minutes, I have visible muscle atrophy in left hand between thumb and first finger, I am weaker on left side, I have had needle emg and it shows tongue fasciculations ( back in July) they are constant. Since about August my bottom jaw has decided to join in and it now has a tremor and I have worn down my pointy teeth due to teeth chattering constantly. I find almost all food now gets caught up on the left side of my mouth, causing me to gag. I am seeing a speech therapist next week to discuss, MRI noted slight tongue atrophy.
    I am in a great place mentally, and am living my life for what I can do, rather than what I can't do. I am so exhausted by the end of the night and in bed by 7 pm to rest the body.
    But just wondering what other types of things could this be,
    MRI ruled out lesions, ms. Muscle biopsy ruled out Myopathys.
    To me I'd just like to know so I can plan for the future. I am a single mum with an 8 year old.
    How did you cope during early stages, and being undiagnosed?

  4. #14
    Hi Sueg

    I feel so sorry for you, you just need to know what is wrong with you, obviously.
    I had many tests and appointments with my neurologist 18 months before diagnosis. No one believed me when I told them, I think I have MND. The fasiculations maybe bfs, I was told. My voice maybe to do with stress, my bottom jaw chattering, because I was cold,. My weak hands and wasting was just an age thing. Every time I developed a new symptom, family and friends would find an excuse? I felt so lonely at the time, I felt I was doing the fretting on my own,
    Once I was delivered the diagnosis, although extremely upset, but there was relief in a way, as everyone had to believe me now, and I mow have the support I felt I should have had a long time ago.
    So, I totally agree with you, it's a nightmare. The sooner you will find out, the better you will feel and I sincerely hope it's something different than MND.
    Big hugs
    Mags x

  5. #15
    Oh Sueg

    I really hope you get answers soon. i was diagnsoed within two months so your wait is just shocking. I am SO glad you are in a great place mentally as hanging around without knowing is awful. I hope the speech therapist helps a lot and that you get answers quickly. It is so mcuh easier when you know what you have.


  6. #16
    Thank you, Wendywoog, mags 55, and Susan,
    It is nice to hear how others got to their diagnosis
    I suppose if it is mnd I have had slow progression over 2 years so hopefully that continues.

  7. #17
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Sue;

    It's horrible not knowing and it took ten months for me to be diagnosed. I found that I lost a lot during the first year and it has been very gradual since then. Try to finish and swallow properly each mouth full before putting any more food in.

    Hope you find out soon that it's some other thing and not Mnd but please use us for advice on any symptoms.

    Love 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.

  8. #18
    Thanks Terry, yes finishing each mouthful is great advice. I find the first couple of swallows are at times fine, but then my jaw gets tired and I forget to be careful, is when the food gets caught.

  9. #19
    Sueg, I think most of us have had to wait some time for a definitive diagnosis. Mine took over a year with all the classic symptoms. My GP refused to refer me for neurological tests and got quite huffy when I told him that I had MND. Instead he treated me for arthritis, crumbling bones, undiagnosed infections, miss aligned discs in my back ( none of which I head ) he prescribed anti-inflammatories, antibiotics, infrared therapy and acupuncture and physiotherapy. It was only when I saw a Locum Doctor Who sent me straight away for the tests that I got any sense out of anybody.

    I know that neurological conditions are sometimes hard to diagnose early on and sometimes they rely on the progression to give you a definitive diagnosis. That's a pretty difficult time waiting and not knowing. Your symptoms sound typical of MND to me but I do hope I'm wrong and they find something else is going on. In the meantime you have lots of support on this forum from many knowledgeable people and we are all in the same sort of boat,just different depths of water.

  10. #20
    Hi Sue
    So sorry you are still stuck in limbo, but we are here with you so ask any questions you need and just chat and vent when you need. When you are being bounced around doctors it's nice to be able to go somewhere where people have been through the same process and understand the uncertainty.
    Wendy x

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