I've been told I might have MND

[Mickey18]

Hi, I am a 53 year old woman and a couple of months ago I was referred to a Neurologist and was admitted to hospital for 5 days. It wasn't until I was in hospital that I realised that they were querying MND. I had an EMG, nerve conduction testing, lots of blood work, MRI etc. I was then discharged and told I have "sum sort of muscle wasting disorder" that will continue to progress and will not get better.
The doctor said he was referring me to another Neurologist that specialises in Neuro-muscular conditions. Instead, I have since found out that I have been referred to a Neurologist that specialises in MND and is a leading expert in the diagnosis of this disease.
I have progressive muscle wasting and weakness that started in my legs and is now affecting my arms as well. It is becoming difficult to use my right hand. I also have a lot of muscle twitches and am being woken at night by extremely painful cramps in my left leg.
I have had to give up my job, which was very stressful. I am now just waiting for notification of when this appointment will be. I am very scared and am interested to know how others cope with this phase? I know there are a number of things this could be, but it is hard to stay positive.
I will appreciate any advice or thoughts. Thank you

[nunhead_man]

Good morning Mickey,

I am sorry you have had to join this rather sad crew - but you have come to the right place for some good advice.

I too went through the phase of being told I had some sort of motor neurone difficulty before I was actually diagnosed with motor neurone disease.

I think you should wait until you see the neurologist for a diagnosis as I am in no position to second-guess what that diagnosis will be.

Which hospital are you attending?

And when will this be?

And I think it would be useful, given that you think this may well be motor neurone disease for you to begin to make connections with the local community, you may be able to offer you some help, perhaps starting with;

1) the local branch of the Motor Neurone Disease Association, who may be able to provide you with support and perhaps the help of an Association visitor

2) the motor neurone disease coordinator at your nearest MND centre who should begin to help you get support from the variety of professionals you will need to help you with your life

I will leave it to others to make other suggestions

[Lynne K]

Hi Mickey18, sorry that you are half expecting an MND diagnosis. What a worry. I hope that your neurology appointment comes quickly so that you find out one way or another.

About night time cramps. They tend to happen when we stretch very tight muscles. I stopped having very painful cramps by avoiding stretching in bed. But I sometimes do leg stretches standing up (whilst holding on firmly to something). Others take medication for it. I won't name any at the moment as I think that it's best to try non medicine solutions first of all. You could look at other forum discussions about cramps by putting 'cramps' in the search box.

If your legs are weak and/or stiff making walking difficult then your local services could get you a walking aid. These are usually organised by our OT's (Occupational Therapists) but I don't expect that you have one yet. So maybe speak with your GP to see if he can refer you. But if your neurology appointment comes soon all your services ought be put in place forthwith.

My fingers are getting weak but I'm still using them. This is a cruel disease indeed but chatting on our forums is a great help. I hope that you find this so too.
Take care, Lynne

[MNDConnect]

Hi Mickey18,

I am very sorry to hear that you are concerned about possible MND. It’s understandable that you feel at a loss. Waiting for answers can be so difficult and worrying.

If it would help, then please do feel free to give us a call here at the MND Connect helpline. Sometimes it can be really helpful to discuss your concerns over the telephone. We are available Monday to Friday from 9am to 5pm and 7pm to 10.30pm on 0808 802 6262. Alternatively, you can send us an email at [email protected] We are a small team and we all have health and social care backgrounds, so please do not hesitate to make contact with us.

Kind regards,
Prachi

[Mickey18]

Thank you all so very much for your kind words. I am actually in Australia, however I haven't been able to locate any online forums about this topic here. I am lucky enough to have already been referred to a Complex Chronic Disease Team here in Queensland, who have already arranged for an OT to visit me tomorrow to see if any equipment may help me.

I have also contacted my local MND association and an advisor from there came to see me on Monday. He is contacting the Neurologist to try and speed things up a bit, because I have been told I won't get an appointment until at least late January. I think it is amazing that these people are here to help, even though I do not have a diagnosis and more importantly, it could be something else altogether that I have. I am also hoping to see a physio soon to help with exercises for my stiff, painful legs.

I do have a question though: I read somewhere that there has been a link found between muscle wasting/ weakness and long term corticosteroid use. I have been using steroid creams for nearly 30 years, due to dermatitis. Has anyone heard of this?

Thank you all again.

[Mickey18]

Thank you all so very much for your kind words. I am actually in Australia, however I haven't been able to locate any online forums about this topic here. I am lucky enough to have already been referred to a Complex Chronic Disease Team here in Queensland, who have already arranged for an OT to visit me tomorrow to see if any equipment may help me.

I have also contacted my local MND association and an advisor from there came to see me on Monday. He is contacting the Neurologist to try and speed things up a bit, because I have been told I won't get an appointment until at least late January. I think it is amazing that these people are here to help, even though I do not have a diagnosis and more importantly, it could be something else altogether that I have. I am also hoping to see a physio soon to help with exercises for my stiff, painful legs.

I do have a question though: I read somewhere that there has been a link found between muscle wasting/ weakness and long term corticosteroid use. I have been using steroid creams for nearly 30 years, due to dermatitis. Has anyone heard of this?

Thank you all again.