Confirmed

[gazap]

It is confirmed that I have bulbur onset MND. I have no words right now, even though I was expecting it. I'm 40 and was expecting a little bit more out of life. I'm struggling with acceptance, Im overcome with fear and find myself in a place of hysteria.

[WheelsOfSteel]

So sorry you got the bad news.
We will be here for whatever support we can offer.

[Arcadian]

gazap Sorry to read that, I also appreciate you have had an anxious build up to the diagnosis.

Do use the Specialist Nurse guidance at the MND MDT Clinic (I’ve an appointment there on Thursday), as well as the MNDA Connect Helpline for areas you need support with.

[JamesW]

Sorry to hear about your diagnosis, we are all here for you 😔

[Hope]

Sorry you have had the diagnosis no-one wants. It will take a while for it to sink in, there is a lot to think about. Acceptance is hard. It took me several months and even now I still have moments of fear of what lies ahead.

Were you given details of your support team? As you are bulbar onset, has anyone mentioned voice banking?

You will find a lot of support here.

[gazap]

gazap Sorry to read that, I also appreciate you have had an anxious build up to the diagnosis.

Do use the Specialist Nurse guidance at the MND MDT Clinic (I’ve an appointment there on Thursday), as well as the MNDA Connect Helpline for areas you need support with.

some things are planned but to be honest I switched off when I heard the terrible news

[gazap]

Sorry you have had the diagnosis no-one wants. It will take a while for it to sink in, there is a lot to think about. Acceptance is hard. It took me several months and even now I still have moments of fear of what lies ahead.

Were you given details of your support team? As you are bulbar onset, has anyone mentioned voice banking?

You will find a lot of support here.

is your breathing affected yet? Mine is starting to play up and I don't have any assistance with it yet so that's scary. I can't talk anymore because I feel the muscle sqeezing hard around the lungs the only things which are OK with me are my hands...so far

[gazap]

I'm also having a lot of nerve pain, burning and tingling irritation. Anyone else experience this? Its bad enough with the cramping let alone this on top. I havent slept for over 2 days

[michelleroberts]

gazap Sorry to hear of your diagnosis. I was diagnosed 2/2/23 - I did expect it to be a yes but still a shock hearing the official diagnosis.
I was fit and healthy - never been to see my GP in over 25 years!
Had my AZ covid jab, started limping a few days later, got foot drop, walked with cane, walked with a walker and now a wheelchair.
I can still walk several steps with a walker albeit hard work.
When I started with my limp I used to joke saying the covid vaccine had shrunk my leg - little did I know.............
Take care xx

[Hope]

is your breathing affected yet? Mine is starting to play up and I don't have any assistance with it yet so that's scary. I can't talk anymore because I feel the muscle sqeezing hard around the lungs the only things which are OK with me are my hands...so far

I am fortunate that my breathing is not affected too much but I do get a little breathless on exertion. I had respiratory tests quite soon after diagnosis, hopefully you will too. These tests will show whether you need assistance with breathing.

[gazap]

I am fortunate that my breathing is not affected too much but I do get a little breathless on exertion. I had respiratory tests quite soon after diagnosis, hopefully you will too. These tests will show whether you need assistance with breathing.

do you know if the assistance helps with your breathing or does it just keep you at that stage? hope that makes sense. thanks x

[Ellie]

gazap Did you get to see the neurologist in the MND Clinic or as a standard appointment in the Walton Centre?

Did the neurologist go through your EMG results with you and could she/he offer an explanation for your “excruciating pain in your arms and legs”? If you could get rid of that pain, that would improve your quality of life.

[gazap]

gazap Did you get to see the neurologist in the MND Clinic or as a standard appointment in the Walton Centre?

Did the neurologist go through your EMG results with you and could she/he offer an explanation for your “excruciating pain in your arms and legs”? If you could get rid of that pain, that would improve your quality of life.

thanks Ellie. What's frustrating is that I had a letter from Dr Rhys Davies stating that the EMG was NORMAL. I then had a follow up appointment with him at gwynedd hospital (north wales). From hearing my laboured breath and need to breathe, and by looking at my tongue, he diagnosed me there and then.

I only had the EMG a month ago. So I guess it doesn't pick up anything in the bulbur even though a needle was put under the chin. The burning pain is nerve pain

thanks
Gareth

[Ellie]

What's frustrating is that I had a letter from Dr Rhys Davies stating that the EMG was NORMAL. I then had a follow up appointment with him at gwynedd hospital (north wales). From hearing my laboured breath and need to breathe, and by looking at my tongue, he diagnosed me there and then.

Erm, that is not good enough, nor is it how ALS/MND should be diagnosed, bulbar onset or not. I have major concerns over your diagnostic process and outcome.

You need to be seen by an MND specialist neurologist, so that means you need to chase up your appointment at the Walton or have Rhys Davies do an urgent referral for you. (Rhys Davies is a Dementia specialist.)

[gazap]

Erm, that is not good enough, nor is it how ALS/MND should be diagnosed, bulbar onset or not. I have major concerns over your diagnostic process and outcome.

You need to be seen by an MND specialist neurologist, so that means you need to chase up your appointment at the Walton or have Rhys Davies do an urgent referral for you. (Rhys Davies is a Dementia specialist.)

thank you. I'll follow up