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Nov 28, 2016
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Learn about ALS
Country
UK
State
Cheshire
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Stockport
A very good morning from across the pond. If I may introduce myself to you all I'm Martin a 46 year old male from Cheshire in the United Kingdom. I'm ever so lucky to be in good general health both physically and mentally and I stand approximately 6' 2" tall and a little overweight.

If you would be kind enough to please note: As a former accomplished Muay Thai boxer strength and balance has never been in any way a concern until now. so not to endure you all to the "war and peace" version of my current problems I will list the diagnosed current signs and symptoms.

1. Diagnosed Atrophy in left leg, left ankle, left hand, both left and right shoulders.

2. Diagnosed clinical weakness in all above mentioned areas.

3. Diagnosed Dismotility, currently at the level of a stroke patient, yet becoming more problematic.

4. Diagnosed Bladder Detrusor Overactivity.

Moving onto the signs and symptoms to which no one to date is able to explain.

1. Very poor balance even when standing still.

2. Prominent left leg limp.

3. Increasingly falling and tripping (becoming more reliant on crutches, walls and sofas.

4. Dropping items from both left and right hands (this can be either a heavy or light item in differing sizes).

I'm ever so happy to say all Neurological testing has returned clear yet, my Neurologist did happen to mention when executing my EMG and NCD testing and whilst discussing MND and I quote " it normally takes few times before I find it ". Yep you did hear right....!

Moving forward I'm ever so lucky to be under the Walton Centre in Liverpool in the United Kingdom yet I would very much appreciate any education and or possible direction from whom I believe to be the real specialist. Thank you all in advance for taking time to read and respond.

Kindest of regards
Martin.










So to the further signs and symptoms
 
Hi Martin

What tests have you had besides an EMG? Are they exploring other areas besides neurology?

Who did the EMG and made that comment? Was it a neuromuscular or neurophysiology specialist at Walton? Were your symptoms as advanced and widespread as you now describe? If so the comment does seem odd. Many here can attest that their EMGs were diagnostic first time, often with fewer symptoms. Others will tell you initially it was not fully diagnostic but abnormal and suspicious.

Do you have UMN findings? Sometimes they come first though with your clinical weakness if it is MND I would have thought LMN involvement.

What is their plan going forward? Are they addressing your symptoms? Whatever this is, falls are bad and it sounds as if you need afos
 
Hi Nikki and thank your ever so much for your timely response.

Firstly I must apologise as I did forget to mention in my first post that before being referred to a Neurological specialist I did spend a number of months under a senior rheumatologist. Following a vast and comprehensive amount of testing under that speciality everything returned clear and my GP requested further help from Neurological department.

Further to my EMG, and single fibre EMG several MRI scans have been performed on both my head, c-spine and full spine, no scares were found and other than a small amount of wear and tear in my lower back all looked ship shape. If my memory serves me correctly the testing was carried out by a General Neurologist. In answer to your further question at the time of EMG Testing a number of the signs and symptoms where very much apparent and visible.

Moving onto further testing a large array of blood testing too has been carried out and again all clear. Please do excuse me as I don't understand or know what UMN is " sorry".

After my Neurologists was unable the diagnose any cause It's going to be a case of wait and see. I've been fitted with Two ankle braces, two knee braces and two hand/wrist supports, sat down and told that it may be a long and testing road ahead.

Again all education is very much appreciated Nikki.

Best wishes
Martin.
 
UMN is upper motor neuron LMN is lower. What we call ALS has both but some people begin with UMN which is detected by clinical exam. The EMG shows LMN. Your symptoms don't sound UMN. UMN would be hyper reflexes, spasticity, clonus Babinski etc. your neurologist should have commented if these things happened ( generalized hyperreflexia and/ or just a few beats of clonus or a non reactive Babinski can be normal)

Have you been seen by neuromuscular? The comment by the emg doctor did make me wonder if they were specialized
 
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Nikki, my mother has told me on several occasions "if I had a brain I would be dangerous", of course that is what it stands for "so sorry friend".

Was Just recently been passed onto the neuromuscular specialist at The Walton Centre, Maybe a little more time will reveal what is or is not happening?

The one thing that is starting to happen at times is the slight slurring of words, this has been brought to my attention several times by my partner (please note I do not drink alcohol, smoke or take any recreational drugs), dies that help?

Many thanks
Martin
 
A neuromuscular opinion should help clarify greatly.

I encourage you to prepare very thoroughly for the appointment.

Make lists

Perhaps a bullet point list or timeline of your major symptoms be concise but examples of what you can no longer do are helpful

A question list. My questions would be what do my tests and clinical exam show? What is still in the differential diagnosis? What has been ruled out? What tests do I need / what health care providers do I need to see to narrow this down?

Start with your lists now. Revisit them to refine them so you communicate exactly what you need to say. Include the important things but try to make them not too long

Hope this helps
 
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You bet that helps, may I thank you for the education and structured advice. I'm sure all will be revealed in the not to distant future. Your time is very much appreciated and when I find anything out you will be the first to know.

If anyone else would like to educate me I'm more than happy to listen and learn.

Best of wishes
Martin.
 
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