any advice please

[rachel123]

I’m 19 years old and completely new to this forum. I found out very recently that my mum has ‘probable mnd’. She was told this from a MND specialist at a local hospital. Back in May/June 2019 she all of a sudden started feeling twitching sensations in her arms and legs constantly and it hasn’t gone away. She went to the GP who referred her to neurology etc etc and has now been told it’s probable MND. Absolutely devastated and In complete shock is an understatement. I just refuse to believe this is what she has. Surely things should of / would of deteriorated 6 months down the line? The neurologist said nothing else showed up on all the tests she’s had so it can’t be anything else. A few years back (3/4 years) she had a pins and needles sensation in her arms and legs again, had multiple tests for MS but was told it was related to her severe migraines that she’s had since she was a child. She was told her brain had been damaged due to the strength of the migraines she has.

Any advice / information please please please.

[rachel123]

She hasn’t got any other symptoms and the pins and needles from years ago eventually went away. Please help

[Barry52]

Hi Rachel and welcome to the forum.

I’m sorry if your mum has MND and what you say about expected progression isn’t necessarily the case. Some forms of the disease are slow in their expression of the symptoms and can take years to impact. I hope it may be a false diagnosis and although it will be difficult I hope you can stay strong for her sake.

Best wishes,
Barry

[Lynne K]

Hi Rachel, very sorry about your worry but I can't advise. Unfortunately she's going to have to wait for the neurologist to give a diagnosis. I think that it's best to speak to your GP and get referred to councelling. Take care, Lynne

[rachel123]

Thank you for responding. I’m just clinging on to every last bit of hope that she doesn’t have MND. My mum and my family will not cope with this and I’m heartbroken. I’m just praying that things don’t deteriorate in the next 6 months as he said he would refer her for further tests to see if it COULD be anything else.

I can’t function and I can’t go ahead and get on with everyday life. I’m constantly anxious and I’m a flood of tears. I work full time in a recently newish job that I do really enjoy. I have had the last 2 days off since finding out and hoping to try and go in tomorrow but I just can’t stop crying and I want to spend all the time with my mum. What should I do?

[Lynne K]

As I said Rachel speak with your GP. If you cannot function you need time off work and whatever the doc suggests to help. But be honest with him or her. Book a double app so you have time to talk x

[Terry]

Hi Rachel and welcome to the forum;

I would go to work with a letter to your boss, explaining the reason you could be upset sometimes during the day. Don't know what your new job entails but there maybe some space for you to go. It does take a while to function after something like this. Believe us as we've all been through it.

Please feel free to ask any questions or share things with us like you have already done.

Strength & best wishes, Terry

[Gillette]

Hi Rachel, I’m sorry you’re having to deal with your Mum’s “possible “ MND diagnosis.

Did your Mum’s neurologist explain what he or she meant by “probable MND”? He or she wil have meant either:

(1) that she probably has MND
or
(2) that her symptoms fit what is actually known and classed as a ‘probable’ diagnosis of MND.

By one means of diagnosing MND, the presence, or absence of various symptoms leads to a patient being diagnosed with:

‘Possible’ MND
‘Probable’ MND, or
‘Definite’ MND.

This latter way of categorising MND can be misleading. For example, because I don’t show a particular symptom I am still classed as having ‘possible’ MND, although it’s pretty obvious that I do have MND.

I know this can be confusing but it can be important when trying to make sense of what the neurologist said.

[MNDConnect]

Hi Rachel

I am very sorry to hear that your mum has been advised that she has "probable MND".

Does she have any symptoms other than the fasiculations? It's very rare for someone to have fasiculations with MND and not to have any other symptoms. After 6 months, with MND you would certainly expect to see other symptoms appearing.

Do you know which MND specialist she saw and at which hospital? It sounds as though it may well be worth your mum asking for a second opinion. Here at the MND Association helpline, we do have details of local specialists.

Please do give us a call at the helpline on freephone 0808 802 6262 Monday-Friday 9am-5pm and we can talk through the situation with you and hopefully be able to offer you some useful information and support.

Best Wishes

Rachel
MND Connect Adviser

[TAPG1]

Can anyone give me advise please. I've been told that you can't feel muscle twitching only see it, is this true! Also has anyone experienced retching or sweating in the mornings? I'm told this is not a common symptom. What is the average age to be diagnosed? I'm 46yr old female

[MNDConnect]

Hi Tapg1

Twitching is something that can be felt and is something that is experienced by about 70% of the population. For the majority of those people the twitching is caused by stress and anxiety.

Fasiculations are a rippling under the skin which can be seen.

People with MND can experience sweating as their ability to regulate their temperature can be affected. However, it is a more unusual symptom and something that tends to happen later in the disease. It is also something that can be caused by many other things other than MND. Retching wouldn't usually be considered a symptom of MND.

Are you concerned that you may have MND?

Best Wishes

Rachel
MND Connect Adviser

[TAPG1]

Hi Rachel, Thank you for the reply. Yes lm very concerned that l have MND. I've had a neurological exam which stated unremarkable exam on 19th Sept but l do know that doesn't rule out MND, am l right in saying that? I'm so worried😭. Can l ask what are the most common symptoms and the average age of onset. Does it cause pain? I'm lost as to know where to go from here! Is twitching when you can see and feel? I feel my muscles are popping everywhere in my body, legs, thighs, arms, bum, face even in my head. Would you have more symptoms apart from fasciculation/twitching also? Thank you Rachel.

[TAPG1]

Can l also ask Rachel does it cause rapid weight loss even if you are still eating?

[MNDConnect]

Hi Tapg1

Twitching on it's own would not normally be considered a symptom of MND.

MND can cause weight loss but so can many other things and again, you would expect to see other symptoms.

It might be helpful if you were to give us a call on 0808 802 6262. We can talk through your concerns with you. It's often easier to talk them through in person rather than via email or the forum.

Rachel

[TAPG1]

Can l call you now Rachel