Possible diagnosis in the new year!!!

[Guest]

Hi to everyone on this forum,

My name is Daniel and I am 41,

My symptoms started in Sept - I noticed calf fasciculations and a twitch in my left middle finger this led me to my doctor who on testing noticed brisk reflexes but no loss of strength so referred me for an EMG which was on 22nd Oct which came back clear (Left hand and calf).

Since the EMG I have had a lot of sensory issues burning in both arms, dead arm feeling in both arms, ulnar pain (pins and needles in ring and little finger and whole hands) and a great deal of fasciculations in both calves and foot arches.

As of today I don't feel I have any weaknesses I can turn keys, open jars, stand on tip toes, walk on my heals and can grip things between thumb and index finger but have in my eyes deteriorated - my quad muscles are virtually non existent compared to before, I continue to have fasciculation in calves, feet and now my upper body, both of the backs of my hands skin has lost skin elasticity and my left thumb muscle has started to shrink which I have read is classic sign of split hand syndrome and MND and lastly my right foot arch (flat footed) has disappeared compared to my left.

I have a few questions if anyone has any thoughts on my situation:

Can MND present itself affecting all 4 limbs before any failure of hands or feet etc?

My quad muscles are extremely wasted but my calves are still virtually untouched is this possible with MND?

Is the collapse of the foot arch a sign of potential foot drop?

And finally the skin at the backs of my hands has lost a lot of its elasticity I have read on a post within this forum this normally happens after having the MND for a considerable amount of time - but have only noticed symptoms since September does this seem likely? potentially have I had MND for a considerable amount of time without noticing (slow progression?).

I am not looking for diagnosis just a helping hand in digesting what going on and the potential diagnosis of MND.

My doctor referred me to the Neurologist around a month ago and I received my appointment through today which isn't until June - I cant wait until June being in limbo so booked a private appointment and will see someone on the 25th Jan.

I am truly grateful for members of this forum taking your time to read and maybe respond to my question, hopefully I am just visiting member and will get the all clear if not I know were to find you as you seem a good bunch!!!!!

All the best,

Daniel

[Guest]

My husband's hands had lost the muscle between the thumb and 1st finger on both hands, also on the side of both hands. This happened a couple of months before diagnosis and I knew he'd be diagnosed with MND as I'd previously watched a YouTube video of a fella who'd been diagnosed wuth MND and was filming his symptoms.
My husband's calves and thighs muscles wasted but not his torso area, arms, & back. His shoulders and face slightly wasted.
Being in limbo before diagnosis was terrible as we experienced it from Jan to Oct.
Good Luck Daniel

[Montana Tony]

Hi Daniel
The wait for diagnosis of mnd is usually a long and drawn out process ( mine took over 18 months) as no two sufferers are the same ,you have done the right thing booking a private appointment ( June is ridiculous) but the diagnosis of mnd or hopefully Not mnd takes time which I know you don’t want to hear but I does.
Have a great Christmas and try not to worry
Tony

[Barry52]

Hello Daniel and welcome to the forum.

I am not going to try to predict what your symptoms indicate but I want to point out that there are several types of MND each with some or all of the symptoms you described. However this should not lead to a conclusion of MND which involves various tests which your consultant will explain.

You have wisely arranged a private consultation as for anyone having to wait 6 months is outrageous. No doubt you have consulted Dr. Google but all the data is based on averages and as Tony said, no 2 cases mirror.

Best wishes,
Barry

[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.

[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

[Guest]

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

[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

[Guest]

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

[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

[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

[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.

[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

[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!).

[Guest]

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