Can't mentally cope. Need support.

[Thelifeofsteveo]

Hello everyone.
I'd like to introduce myself. I'm Steven, 37, from Cornwall. I'm a wedding photographer and I live with my amazing girlfriend, Lauren.

Back in February, I was playing a game on my mobile phone and noticed my thumb was cramping up and not working properly the more I used it. It was a very thumb intensive game. Thinking nothing of it, I carried on the next couple of weeks assuming it was carpel tunnel. Off I went to the doctors and she told me it definitely wasn't that. I have absolutely no issue pinching or grabbing, but extremely weak in extending my thumb and index finger. She requested a nerve conduction study.
Weeks carried on and I noticed at training, my left arm is noticable weaker than my right. I then also noticed muscle twitching. This led me to google weakness and muscle twitching and obviously alarmbells rang.

I had my nerve conduction study but the lady told me I needed an EMG as I explained my symptoms. She referred me to a consultant neurologist who did a physical examination and told me that although my symptoms didn't appear typical of MND, that I need to keep an open mind.

I paid privately for an EMG and was seen my another consultant. He told me it sounds like a trapped nerve in my left arm. I had the EMG but no results there and then. Told me he would email his initial findings to my consultant. I rang him the next day and he told me that there are definitely issues with my left arm but also 'subtle changes' elsewhere, which he didn't elaborate on.
I decided to pay to see a neuro physiotherapist today to see if it could be a trapped nerve and what I should do. She assured me it wasn't a trapped nerve.
My symptoms haven't got worse since February as far as I'm aware but at this point I can no longer mentally function or cope. I can't eat or sleep or leave my bed.
I don't understand what else it could be at this stage. All my bloods came back fine. I'm waiting for an MRI and I will have a second EMG in October time.
What am I supposed to do? How does one cope with the impending diagnosis of MND. I have tried calling local mental health lines but they can only listen. I am already on the highest dose of antidepressants. I have some Valium to help me make it to work. I have a holiday with my girlfriend in Portugal on Sunday but I don't feel I can go due to extreme anxiety.
Everything seems to all be far too coincidental for it to not me MND.
How am I supposed to carry on as normal? Sorry for the rant but I am more scared than I could possibly imagine.
Thankyou x

[WheelsOfSteel]

I sympathise, but you must understand that nobody can offer diagnostic advice on this chat forum - we have to leave that to the professionals.
How you cope with your situation is something you yourself have more control over.
Best wishes for you.

[Thelifeofsteveo]

Of course I fully understand that. I wasn't expecting a diagnosis as at all. I'm just so mentally lost, I don't know what to do and was wondering what everyone elses coping methods are.

[Zante]

I think u need to not panic about a disorder that you haven't been diagnosed with and probably won't be because it's very rare. Try not to over think it and please don't let it ruin your holiday which am sure is a much needed break away. Did u see a specialist mnd consultant ? Has the neurologist floated any thoughts as to what might be the cause and other possibilities? Have u looked up benign fasciculations syndrome? Did u have the private emg report sent to you so u can read the findings summary?
sorry lots of questions but I think u need to try not to focus on diagnosing yourself and try and take a step back and make some positive things in your life like the holidays to stop your thoughts constantly going onto the mnd thinking. It's so rare and so many other causes for twitching cramping weakness. Stress and worry can have such a huge impact on so much and might be adding to the issue. Take some time out and do what u can to move away from mnd until u have seen and spoken to neurology again. All the best

[JamesW]

Hi Steve,

I am sorry that you find yourself here with such a worry for you to deal with. You will find everybody here very supportive of your situation as we have already been exactly where you are right now.

Firstly take some comfort that at this moment in time you do not have a confirmed diagnosis of MND. There are other things that could be causing your symptoms.

Please try and make the most of everything you do you have, yes this is worrying but do not waste your life away hiding in bed. You may not be able to choose whether you have an illness or not but you can choose how you react to it if that is the case.

We have no magic bullets here for you but we are here to help listen as best we can x

Take care
James

[Thelifeofsteveo]

I think u need to not panic about a disorder that you haven't been diagnosed with and probably won't be because it's very rare. Try not to over think it and please don't let it ruin your holiday which am sure is a much needed break away. Did u see a specialist mnd consultant ? Has the neurologist floated any thoughts as to what might be the cause and other possibilities? Have u looked up benign fasciculations syndrome? Did u have the private emg report sent to you so u can read the findings summary?
sorry lots of questions but I think u need to try not to focus on diagnosing yourself and try and take a step back and make some positive things in your life like the holidays to stop your thoughts constantly going onto the mnd thinking. It's so rare and so many other causes for twitching cramping weakness. Stress and worry can have such a huge impact on so much and might be adding to the issue. Take some time out and do what u can to move away from mnd until u have seen and spoken to neurology again. All the best

Thankyou for your reply.

I havent seen the private emg report yet. Im aware of so many things that can cause weakness, cramping and twitching but surely having them all is far too coincidental? Individually on their own, i wouldn't be so worried but the fact I'm getting everything can't leave much else?

[Ellie]

Give MND Connect a call on 0808 802 6262

The helpline is available Monday to Friday between 9am - 5pm and 7pm - 10:30pm.

[Zante]

Thelifeofsteveo just as an example benign fasciculations syndrome has all the above so yes other illnesses do have many aspects. Again for example of trying not to worry a neurologist doing a complete neurological physical examination usually knows the telling signs of mnd. Dont get me wrong some poor people here have gone around the diagnosis maze for years , but I think a clinical examination might have shown something. Apart from the one hand do u feel your usual self physically? Working OK managing lifting equipment, walking and balance etc? Have u tried taking anything supplements wise for cramps? Magnesium is very good. I know its a worry but dr Google is lethal. X

[Music man's wife]

None of us knows what lies ahead but for your own sake try and enjoy today. Go to Portugal, have a great time.
Who knows what tomorrow will bring but should that bring the worst you may find inner strength you never knew you had.
Very best wishes xx

[Thelifeofsteveo]

Thelifeofsteveo just as an example benign fasciculations syndrome has all the above so yes other illnesses do have many aspects. Again for example of trying not to worry a neurologist doing a complete neurological physical examination usually knows the telling signs of mnd. Dont get me wrong some poor people here have gone around the diagnosis maze for years , but I think a clinical examination might have shown something. Apart from the one hand do u feel your usual self physically? Working OK managing lifting equipment, walking and balance etc? Have u tried taking anything supplements wise for cramps? Magnesium is very good. I know its a worry but dr Google is lethal. X

Thankyou again for your reply. I have weakness in my left arm too. Apart from that I believe I'm fine. My back really causes me issues after a long day at work but I carry really heavy cameras around stood on my feet for 13 hours so I guess that's natural.
I Realise i forgot to mention the weakness in my left arm too. Noticed it back in March at training and that its considerably weaker than my right arm. I've not trained since.
I started taking magnesium again but I'm still getting twitches, especially in my left bicep.

[Zante]

Go on your holiday and enjoy the break away. The mri might show some causes for arm weakness so hopefully u won't have too long to wait for the answers so u can then get the medical help u need. And for the worry and anxiety during the waiting time I can also only suggest what Ellie did and phone mnd connect because they listen and have the experience and can answer your questions far better . Take care.

[TinyLady]

I know it is scary but no amount of worry or missing out on life will change the facts, whatever they turn out to be. I was diagnosed late and didn't get the chance to grab life by the balls and live it hard.

My advice would be to go to Portugal, get on with your life, choose to find the good things to focus on and don't waste time worrying. I know its not easy, but it changes nothing for the better. Give yourself an hour every couple of days to focus on your worries if you must, but then park it and live your life. The answers will come in time when the pieces of the puzzle are clearer.

Do phone MND connect - they are incredibly knowledgeable and supportive.

[Helen212]

Post this on MND connect

hopefully they will answer you or as Ellie says call them.

Also check out BFS on Reddit many with your symptoms. They may relate.

I’m undiagnosed, but however I completely relate to what you are going through. Try and go on the holiday. Nothing is going to happen whilst you are away. Easier said than done I know,

Thinking of you.

[denise]

It could be something like repetitive strain injury. Trapped nerve, anything but you will make yourself ill thinking about what it could be. I know it isn't easy when you feel scared but what if you spoil your chances of holidays and lovely times and it turns out to be nothing. What a waste. If it turns out to be serious then you will kick yourself for not enjoying life while you could. Nothing in this life is certain so yes try and enjoy life and yes share your health concerns but don't let it take over your life.

[MMG]

denise spot on.
xx