New to forum

[LesleyB]

HI, I am new to the page. My name is Lesley ,I am 65 years old and I have just been diagnosed with MND. My problems started in June 2019 with foot drop At first the blame was put on my breaking my ankle a few months before Then after weeks of useless physio I asked for more tests. Nerve conductivity tests blamed my back. MRI couldn't find anything wrong with my back and the story went on. Lost referral's. Telephone appointment not face to face and a six month wait for a Neurologists appointment. By March 2020 I was a different person, Could hardly walk because my muscles in my legs were atrophying. No more working in our pub ,no gym or walking out with the dogs every day. My balance had got worse. I was told it was nothing serious and to adapt to having foot drop. Then lockdown arrived and I was forgotten in Sept and demanded a second opinion and was told there was a six month waiting listSo with the support of my GP I paid privately to see someone .Who disagreed with all the other opinion, agreed to take my on as a NHS patient had more in depth Nerve conduction tests. He can find no other explanation for my symptoms other than MND .

[Ellie]

Welcome to the Forum, Lesley.

Sorry you've been through the wringer with the diagnostic process. May I ask if the NHS Neurologist is part of a specialised MND Clinic?

Hope you have good family support and access to community nursing, an occupational therapist etc.
Look after yourself.

Love Ellie.

[Beemer]

Welcome Lesley, thats not a good story, but similar that I too went private to find out I had MND, and then I had the full support of the NHS.
It is said that the GP may only ever see two MND cases in their careers.

[denise]

Hi Lesley
it's horrible that you had to go through that.
I hope you join our forum and we will be hear to help and support you as much as we can.
love and hugs Denise xxx

[Bowler]

Hi Lesley. Welcome to the forum. I look forward to chatting

[matthew55]

Welcome Lesley, In the immortal words of D:Ream...... Things can only get better. It doesn't always seem that way but something good will come from somewhere. Stay Strong Matthew 😁xx

[Gordan1111]

Hello Lesley. xx

[GaryM]

Hi Lesley and welcome to the forum from me. You've done the difficult thing, which is that first post. Lots of helpful people on here with lots of useful experience.

[Deb]

A warm welcome to the forum, Lesley. Its a good place for friendship and support from people who really understand.

I'm so sorry you've had such a hard time being diagnosed and have been given the runaround. Unfortunately I don't think that's unusual. Hopefully now you can access thx support you need to make life easier and safer for you.

Take care of yourself,
Love Debbie x

[Barry52]

Hi Lesley and welcome from me. I hope you have a good support team set up and you can be sure of support from the forum family.

[Lynne K]

Hi Lesley, welcome to our forums and well done for posting. As said already first posts can be hard. Also, I’m glad that at least now you have a diagnosis you can receive help from your local services. I certainly hope that this happens very soon. I don’t wish to overburden you but when you feel up to it please have a look at previous posts about voice banking. Take care, Lynne x

[richard]

Hi Lesley welcome to the group no one ever really wants to join however upon joining you find an amazing bunch of people on the same journey.

Richard

[Suefromwakey]

Hello Lesley B,

I sympathise with you and know your position as it took absolutely yonks for my husband to get his diagnosis, it would seem as some of the others say this is not unusual whereas some seem to get a diagnosis almost straight away, they must present differently.

Best wishes Sue

[LesleyB]

Hi Everyone,

Thank you all for the support.Ellie , my doctor is a neuroligist at St Lukes in Bradford. So not sure about MND team. I got his name originally from a Neuro Physio who was a friend of a friend. I don't live in Bradford but only six miles away. Yes, I have already had contacted from my local pyhsio, OT team and had a call from speech therapy. Plus my GP has spoken to me a few times.As I said to my husband, as soon as you give a name to something then the action began.At the moment we are taking one day at a time. It has come at a junction in our lives when our plan of retiring after running a pub for 26 years has been thrown a little.I have always been the get up and go one, rushing around getting things done etc.We are in the middle of selling up and moving house .All has to be done with me directing and him doing! Bless him he has taken it in his stride. The lockdown as you all no, is difficult when you can't have family or friends along to help.

[Mary C]

Hi Lesley ,I too started having footdrop and some similarities to your experience until eventually getting diagnosed June 2020 at age of 65.We too had retirement plans for walking holidays and travel which we no longer want to pursue.. This forum has helped me in many ways plus good professional relevant support and a circle of close friends and family plus my catholic faith to find the blessings in each day. Its not easy but many people on here have found a way to adapt to changes and of course there are frustrations. A house move is a big change too.I wish you well Lesley.Best wishes Mary