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Thread: Recently Diagnosed

  1. #1
    Forum Member jDv1978's Avatar
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    Recently Diagnosed

    Hi All

    I was diagnosed with MND on the 2nd July this year following approximately 9 months of various tests and examinations. My neurologist initially advised that my MND was slowly progressive (can't seem to find much info about this level of MND online) but following a recent 2nd opinion with Prof. Matthew Kiernan at the Brain & Mind Institute in Sydney, the team there confirmed my MND diagnosis however didn't seem to think it was slowly progressive.

    It began in summer 2013 as a constant twitch for about 2 weeks in my left eyelid, which at that stage was particularly irritating. I lived in the UK at that time and only moved to Australia in August 2013. A couple of months went by and twitches seemed to come and go in various parts of my body all at different times until October 2013 when I then had constant twitches increasing in strength in my right arm and left leg. I went to see my GP who referred me to my neurologist.

    I had the usual nerve conduction tests, EMG and TMS, as well as a C-Spine MRI. The neurologist decided to see how things go and asked me to return in January 2014. By that stage I had noticed muscle loss and increasing weakness in my right hand, moreso between the thumb and pointing finger. Fasciculations were rife now in both arms and legs. I had done my own Google searching of the symptoms and had already discovered MND by that point and mentioned it to the neurologist. She said it wasn't something she had considered and that I again monitor the symptoms and see her again in March 2014.

    By March the fasciculations were more like muscle spasms, occasionally jolting out of my skin as though they had received an electric shock. My weakness in my right hand had increased and I had difficulty at that stage with buttoning shirts, holding cutlery, the usual everyday tasks. Muscle loss had increased in my right hand even further and had begun to cramp in my legs / calves frequently. The neurologist at that stage said having ruled out some conditions that she agreed it could be MND but she wanted to rule out a few other conditions first. I had a blood test sent to a specialist lab in Brisbane which resulted in proving it was not Kennedys Disease and also in May 2014 spent a week on iVig to rule out MMN. The iVig had no effect on my symptoms so MMN was ruled out.

    Further nerve conduction studies followed, as well as EMG and TMS again, and in June 2014 I received the dreaded phone call to "come in and next time bring your partner as we may be in a position to offer a diagnosis". I knew exactly what that meant and my fears were confirmed on the 2nd July 2014.

    Since then I have started my own MND Twitter account, have joined MND New South Wales who referred me to the Brain & Mind Institute for my second opinion. I have found there is a great sense of community and a strong support network for MND sufferers, family, friends and carers.

    Where I am at now is so far from life 12 months ago. Sadly my relationship of 4 years broke down following my diagnosis, not only due to my diagnosis but that was a factor. I am understanding in that my ex-partner is 5 years younger than me (31) so I can understand the difficulty he faced in thinking at his age that he will have to care for me as things get worse. Its not a fun job and sometimes fear overrides love, so I bear no grudges. So I am now sharing an apartment with a friend, who I can't expect to look after me as things get worse so am fending for myself as time goes by & my condition deteriorates.

    More recently I have found that being cold or cold weather makes my right hand much much weaker, so I wear gloves at work due to the air conditioning. I have started to notice muscle loss in the same location on my left hand. I now suffer from cramp all over. If I turn slightly the wrong way my back muscles cramp up, my thighs and calves cramp in my sleep and I wake up with very sore legs. I have in the last couple of weeks begun to experience pretty excruciating lower back pain and pain in my lower abdomen, although sadly I attribute this to the fact that I started smoking again 3 weeks ago after over 3 years off cigarettes, full well in the knowledge that it will do no good for my lungs in my MND battle!

    I can't particularly write anymore, find brushing my teeth difficult, can't use dental floss, opening/doing up my fly, wiping my a**, have a very weak grip particularly in my right hand so always dropping things. Have to use my left hand to hold my right pocket open when putting things in or taking things out. Clicking the remote on my iPhone headphones has become hard, never mind putting them in my ears. I get tired very easily and every morning have a massive hill to walk up to get to the bus stop when going to work and it makes me very short of breath. Ive noticed the muscle on my calves beginning to deteriorate and trying to keep as normal a life as possible is beginning to make my leg muscle sore and ache.

    I was prescribed Riluzole and Baclofen by my GP although I took Riluzole for one week I found it made me very up and down with my moods, so have stopped it for the moment. As for Baclofen, I'm petrified to start taking it as have read so many stories online regarding side effects and increased dependency. I was born jaundiced and so have always had a dodgy liver all of my life, I can't drink much alcohol due to this, and the side effects on the liver with Riluzole and Baclofen seem much too high of a risk for me to take. My GP has asked for a fortnightly liver function test at the start while I get used to the tablets but I still don't think I'm ready for a dependency of daily medication yet.

    Anyway, that is my story so far. I am looking forward to getting to know some of you well over the course of time and sharing our journey together.

    J.

  2. #2
    Forum Member
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    What a story, from what you have written I would have thought you would have been diagnosed much earlier. I waited just 8 weeks for the results of tests to diagnoses and I thought that was long enough. My symptoms closely follow yours, I was diagnosed in March. I am now waiting for a referral to have a PEG fitted as i am choking quite a lot, especially with liquids. Anyway welcome to the forum.

  3. #3
    Forum Member Terry's Avatar
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    Welcome jDv;

    Sorry to hear of your Mnd story and your present position. I would not take Riluzole if there is a liver condition. I would consider baclofen and quinine for the spasms and cramps. If you can get a (profomer) bed, one that lifts your knees and lower legs up you might find some relief from lower leg cramps.

    Best wishes Terry

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