Possible diagnosis in the new year!!!

[shrew]

great news Daniel. Take care

Hi everyone,

I had my Neuro appointment this morning and was diagnosed with Functional Neurological Disorder (FND) as you can imagine this has come as a great relief.

I would just like to say thank you to you all for taking the time to answer my questions and give opinions whilst struggling day to day with this terrible disease you truly are wonderful people!!!

I let this consume me for the last 4 months - I let my anxiety send me to some very dark places spiralling out of control (Never knew anxiety was such a powerful thing????) - but with help I am determined to move on.

You will always be in my thoughts, good night and god bless!!!

Daniel

[Kayleigh]

Hi Iron Will,

Statistically, I am unlikely to reach your age, but maths is not my thing, and statistics - no interest in them either!

I would rather focus my mind on getting on with life, with enthusiasm and a positive attitude.

Amazing that you are still working 6 days a week - good for you!

I agree with you that a powerchair is a wonderful and liberating thing. We can even use them on buses these days. I can whizz up and down the bus ramp, no problem in my powerchair.

But getting to the bus stop is another story - not so easy, due to those pesky kerbs!

A message for local authorities:-
'Crop those kerbs. More drop-downs please!'

Best wishes,
Kayleigh

[Iron Will]

I love your positive 'iron will' attitude. It is good to hear that you look on the bright side of life despite the challenges that your face it sounds like you confront every problem with a solution - I like that strategy! (athough, I sure do agree with you that those high curbs you mentioned in another thread can definitely be little devils to tackle!).

thank you. I think its right you say it as it is in life, (not just illnesses) ok I have MND but as of right now I am feeling good. yes i'm now in a powerchair full time but it's cracking chair, it tilts and I fall asleep whenever I want lol. I know whats coming course I do but I aim to beat Stephen Hawkins record. I am 64 and still work 6 days a week, some people with MND get nowhere near that age.

its just those bloody curbs

Hi everyone and Happy New Year,

Thanks for taking time to post all the positive comments - you have all helped so much!!

I understand that there is a marked difference on a MND/ALS EMG and a BFS EMG and that my symptoms are widespread without any loss of function / weakness with sensory issues which all work in my favour and this is what keeping me positive prior to my Neuro App on the 25th.

The only negative issues that have me worried as BFS wouldn't explain these symptoms are that the skin at the back of my hands has lost a lot of elasticity and also seem a lot skinnier and the loss of muscle mass especially in arms and quads obviously this is only my perception and the Neuro might think differently, I understand that anxiety and stress of my situation hasn't helped and hopefully with the all clear on the 25th I can move.

I will be in touch hopefully with some good news on the 25th.

All the best and thank you,

Daniel x

[Kayleigh]

I love your positive 'iron will' attitude. It is good to hear that you look on the bright side of life despite the challenges that your face it sounds like you confront every problem with a solution - I like that strategy! (athough, I sure do agree with you that those high kerbs you mentioned in another thread can definitely be little devils to tackle!).

[Iron Will]

could be many things so don't go worrying yourself. my diagnoses took 18 months. by the time it came around I was ready for the fight. our minds and bodies are amazing things and overcome most things and lead the rest a right merry dance

[Ellie]

Hi Daniel,

There is a marked difference between what an EMG would show for a person with BFS V awhat it'd show in a person with ALS/MND.

BFS is not associated with nerve damage, ALS is, and this damage is picked up by an EMG, even before tangible loss of function is noticed by the individual.

The tingling, numbness and widespread nature of your symptoms all tie in with the diagnosis you received.

Sorry that your symptoms are increasing - stress and anxiety make symptoms worse, so it can be a vicious circle unfortunately. Hopefully you will be reassured at the Neurologist’s appointment.

Love Ellie.

[Deb]

Hi Daniel and welcome to the forum,

The uncertainty is really hard and I am not surprised you are going to see a private neurologist, although you shouldn't have to. I really hope they are able to give you some answers and peace of mind in the new year.

I wish you and your family a happy Christmas and hope you are able to put your worries aside.
Love Debbie

[Lynne K]

Hi Daniel. Welcome to the forum and good luck with your private neurologist. I agree to put this out of your mind as best as you can and enjoy Christmas. A very happy Christmas wished for you and your family. Lynne

Hi Terry and thanks for the warm welcome;

I'm not sure what is going on but something isn't right hopefully have more of an idea after my appointment - I don't have any current emotional problems but suffered in the past.

Happy Christmas

All the best,

Daniel

[Terry]

Hi Daniel and welcome to the forum;

Many of your symptoms are not normally associated with Mnd, especially at the beginning.

I think that ALS doesn't normally affect all the limbs at once but PLS can.

Do you have any emotional problems?

Best wishes, Terry

Hi everyone,

Many thanks for your replies, I understand its a waiting game - I forgot to mention the neurophysiologist that took my EMG stated that he thought I had BFS but since the test I have deteriorated further.

I will update you all in the new year after my appointment with the Neurologist.

I wish everyone on this forum a Happy Christmas and New Year.

Many thanks,

Daniel

[Kayleigh]

Hi Daniel,
Welcome to the forum.

I am sorry to hear that you are feeling unwell. As others here have already said, it is good that you will be seeing a private neurologist next month so that you can get his/her expert opinion about what may be causing your symptoms. It is such a shame that you are having to pay to see a neurologist, when the NHS is supposed to be there to provide that service within a reasonable length of time from being referred by a GP. However, an advantage of seeing the neurologist privately is that there will be plenty of time allocated for your appointment, so that the neurologist can carry out a medical examination and have a thorough discussion with you. (This is compared to some NHS appointments which, in my experience, can seem rather too time limited and rushed).

Please try not panic, because the next step in finding out if your symptoms could be due to a neurological condition is to get the expert opinion of a neurologist, which you will be doing next month. In the diagnostic process it is a case of taking one step at a time and so try not to think too far ahead.

Try to put any worries about your health aside for now, so that you can enjoy celebrating Christmas and the New Year.

Best wishes and Merry Christmas,
Kayleigh

[Ellie]

Hi Daniel,

You had an EMG on the hand that’s of concern to you and it was normal - that’s great news, it means you do not have ALS/MND! An EMG would not be normal with ALS.

Also, in your favour are: no loss of fine motor skills or function, no loss of strength, “dead” feelings in muscles, “burning” sensations.

I have no idea why you’ve leapt to MND, but you don’t have its symptoms - yahoo!

Best wishes,
Ellie.