View Full Version : newbie here- very confused.

24th May 2011, 16:16
Hi all my partner has just been 90% diagnosed with MND at the very young age of 37 .... we are finding the whole thing a massive shock and cant quite believe it as at present he is still very normal .His only symptoms are fasticulations in his right arm, shoulders slightly and the top of the left arm and his right hand is weakish . He is still VERY strong . he has no other mnd symptoms whatso ever. Do you think from experience it is worthus getting a second opinion?im only 27 and we are both worried about things to come x

hilary walklett
24th May 2011, 16:35
Hi, Kelly, welcome to the forum.

I'm not surpirsed that you are worried and I really hope that it turns out not to be MND. But if it is, we will give you all the help and support that we can.
Fingers crossed for you!!


24th May 2011, 16:38
hi hilary thankyou so much. i think the reason we are questioning it is because he is still so active- going to the gym everyday , mowing lawns and in general looks a picture of health apart from these fasticulations in his arm. the docs have sent off some more bloods today , its so worrying! x

24th May 2011, 17:17
Hi Kelly very sorry to hear of your worries but i will say thats exactly how it was for me when i was diagnosed in July 2010 at 35, it was so hard to believe these lillte ripples in my right arm and a slight right hand weakness would lead to this, but unfortunatley they were right.
By all means get a second opinion if your unsure, it all just sounds very familiar to me.

Sorry if i scare you and i do really hope its not MND.

24th May 2011, 21:18
hi chris thanks for the reply its so bizarre ive juts had a look at your site and cant believe how similar things are my partner has a 6 yr old daughter . how is your partner coping with things?


25th May 2011, 08:37
Hi Kelly

Welcome to the forum, sorry to hear about your partner I think we can all understand how you are both feeling, but you never know they may have it wrong , early days. Lots of info and support here on the forum. My son is 26 and was diagnosed a year ago, he is in South Africa at the moment visiting family with his girlfriend and 3 month old son, so far so good he is managing to continue with a reasonably normal life although he had to give up work. He has weakness in his arms, hands and left leg but is still ( for the time being) able to walk ok and use his arms, hand a bit of a problem, we along wth everyone else on here are hoping for slow progress, such a lot of good research at the moment, so stay positive.

Sonia x

25th May 2011, 09:12
Kelly, my wife seems to be managing ok but i do think she hides a lot from me. The hard part is that you have no choice but to try and get on with things as best you can. There is plenty support around so don't be afraid to ask for help. My website is my main way of venting my frustrations so im not hammering my Polly with my worries every minute, it works for me upto now.


25th May 2011, 15:34
Kellyas Chris above says I was in a very similar situation last year, I'm 42 years old, and as you say very strong fit and active, my symptoms started with a slightly week left-hand something I thought might be down to a trapped nerve, but alas following about 12 months of tests I was diagnosed with full-blown MND. Now about a year and I can hardly walk my right hand is failing their and I have less strength than my five-year-old son.

The main symptoms of MND muscle faccilations, and cramped - does your partner have these?

By all means go for a second opinion, whereabouts in the country are you? - I'm in Somerset but attend the John Radcliffe Hospital in Oxford.

Take a look at my site it might tell you something about my journey if you are interested

Best wishes


27th May 2011, 16:31
Hi Kelly, so sorry to hear about the diagnosis, it's really tough to get your head round. I was diagnosed sept 10, aged 38 and at the point of diagnosis I was exactly the same as you have described. It affects people at different rates so if it is truly mnd then lets hope it is not aggressive.

28th May 2011, 20:05
Hi Kelly

MND is a serious condition so I hope that your partner is being seen by a Neurologist and not just your GP.

There are other conditions which have fasiculations and muscle cramps as symptoms and these need to be eliminated. The blood tests are one of the steps in the elimination process. To speed things up, you could ask your neurologist to refer your partner for nerve conduction tests and an EMG (Electromyography). These tests will reveal wether there are any abnormalities in the main muscle groups indicating disease. You can read about the test here: http://en.wikipedia.org/wiki/Electromyography

There are no tests to tell if one has MND or not, nothing you can see on a scan or under a microscope or test in a path lab, so the diagnoses has to be based on clinical evidence. Because the diagnosis is a serious matter it is normal to be given a second opinion to confirm it.

I hope you get a proper answer soon.


27th June 2011, 11:41
It took them nearly two year to work out what it was with me, it was a relief to finally know, but them the sadness and tears started. I knew to fight those as getting down helps no one. I’m seeing countless numerous people in the forum here writing of the exact same symptoms I had. They tested me for prostate cancer and a hernia we assumed it was MS but sadly it is MND. I’, sure that every literal person in spirit is with you and your partner every step of the way

13th July 2011, 18:57
sorry i havent had time to reply to my thread - this month has been abit of a blur my partner has now started on rilulek and is hopefully starting the trial in aug/sept time . We are having lots of holidays and time together so far nothing has changed in himself he is still very active and only has a weak right arm , He is however getting very annoyed by the constant fasticulations all over his body . I just hope a cure is found soon x

bakeit Forum