Awaiting diagnosis

[Guest]

Hello,

I am new to the forum. I have been reading through some of the threads and was overwhelmed by the kindness and support shown by members.
I am currently under neurology awaiting an MRI scan. I have had a number of symptoms that could be MND. I am in a bit of a desperate state of worry and fear. It is very hard being in the position of waiting for results! I have a daughter who is 7 and all I keep doing is breaking down when I think of the potential effects on her! It seems reading on here many people have been through these same trials. My family is very supportive at this time but it can be a burden on them keep going over your concerns.

Daniel

[Dis1960]

Hello Daniel,

You must be finding the prospect of MND overwhelming

Please take it one step at a time- you have an M.R.I. Scan coming up. Is there a partner/family member/friend who can go with you to this.
( it can cause a dizzy spell )

Also if your voice is still reasonably normal then you might want to look into voice banking

Good wishes to you

[Guest]

Thank you Dis1960.

My wife is coming with me to the MRI. She has been so very supportive. The mind always rushes ahead and I am terirble for needing answers. Thank you for your advice on voice banking.

Daniel

[Terry]

Hi Daniel and welcome to the forum,

It's a tough time going through being diagnosed with anything like this. And it is especially hard with a young family.

What did you notice first and how long ago?
What is currently wrong?
What tests have you had done?

Best wishes, Terry

[shrew]

Hi Daniel, welcome, so glad you have support. Please let us know how you get on

[Kayleigh]

Hello Daniel and welcome to this forum,

I am sorry to hear that you and your family are having to go through such a difficult time.

Understandably, this is a very worrying time because you don't know what is causing your symptoms. Although you are worried about MND, there are many other possible causes which would need to be ruled out, before a diagnosis of MND could be made.

I know its not easy, but please try to take one step at a time - see what your neurologistist says once he/she has the results of your MRI scan, and take things from there. It might be that other tests still need to be carried out before any diagnosis can be made - and so please try go with the flow of things, without thinking too far ahead, if you can.

Its great to hear that you have got a very supportive family. You will also find a lot of support from the friendly folk on this forum - please feel welcome to ask us for support or advice, as often as you like.

Love and hugs to you, your wife and daughter,

Kayleigh x

[Guest]

Hi Daniel and welcome to the forum,

It's a tough time going through being diagnosed with anything like this. And it is especially hard with a young family.

What did you notice first and how long ago?
What is currently wrong?
What tests have you had done?

Best wishes, Terry

Terry, thank you for your reply. I noticed weakness in my right hand and was getting cramps in it at night. I also felt my legs were weaker than normal when walking. This was about Christmas. I saw my at the end of January GP who referred me to neurology. The appointment came through for April. I started to develop twitching in various muscles around my body and felt the weakness in the effected limbs slowly progressing. I had also noted that my muscles seemed to be getting smaller. I work for the Ambulance service and was in a very heightened state of anxiety because of my symptoms. I had blood tests and they came back normal although I don't know exactly what they tested for. I managed to get my appointment with the neurologist brought forward and he then booked an MRI which I am due at the end of this month. He did various tests and again said my bloods were normal. I know I am progressively weaker but it all seems to be happening so quickly. Iam not at work at the moment.

Daniel

[Guest]

Kayleigh,

Thank you for your reply. My wife and daughter mean everything to me. I think it is the fear of how things could possibly effect them that is making my anxiety so extreme. A position that many people in the forum have obviously been in.

Daniel

[Terry]

Hi Daniel;

You have at-least another 3 tests to rule out other possible things. the MIR, Lumber puncture and EMG. I hope they show up something else.

Love Terry

[Sheila]

Hi Daniel,
welcome to this very helpful forum. I think it is best to take one day at a time. Easier said than done I know. I suffer with very bad anxiety aswell. I was diagnosed with mnd at the end of January. So you can imagine how bad my anxiety has been. But with the help of my husband and son, they have got me through this. Also the kind people on this forum have been brilliant. I was diagnosed by Emg only, after over a year of symptoms.

All the best, and try not to worry.
Love Sheila.

[Lynne K]

Hi Daniel. Welcome to our forum. Sorry about your symptoms. You must be very worried like all of us were at a similar time. I'm too tired to type much as just got home from a music concert. I'll write more tomorrow. Take care. Lynne

[Guest]

Hi Daniel. Welcome to our forum. Sorry about your symptoms. You must be very worried like all of us were at a similar time. I'm too tired to type much as just got home from a music concert. I'll write more tomorrow. Take care. Lynne

Thank you for your message. Hope you enjoyed your concert!

Daniel

[Ali]

Hi Daniel,

I strongly agree with Dis1960 about voice banking. My mum was diagnosed with MND - Progressive Bulbar Palsy in July last year, she started slurring her words back in March, by Christmas she had barely any words. She has good days where we can understand a word or two but mainly we can’t make any words out. I miss my mums voice. I cannot remember what she sounds like.

The wait is awful. I pray that it’s not MND but if it is, the MNDA are wonderful, they’ve made mums diagnosis so much easier.

Fingers crossed. Ali.

[Jaxx]

Hello Daniel, sorry you find yourself on this forum, hopefully they will diagnose something else, I will keep my fingers crossed, I’m the Mum my daughter was diagnosed Sept 17 a couple of months after having her second baby and had an 8 yr old daughter so I appreciate what you must be feeling.

[Deb]

Hi Daniel and a warm welcome to our forum,

I am so sorry you are experiencing worrying symptoms: having tests is so stressful and the waiting for results and then further tests seems endless.

It sounds like you have lots of loving support around you so try and take one day at a time, I know that's easier said than done. I have my fingers crossed that it turns out to be something else because there are lots of conditions that mimic MND .

Take Care of yourself and keep in touch,
Love Debbie x