Have now been told MND is likely

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Mike12345

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Unfortunately and regrettably I am back.
I had to be admitted to hospital as my symptoms progressed soo much so that I'm finding it difficult to raise my arms use my hands, get out of a chair and even walk. I won't go into it all, but in 1 week I have dropped 6kg.
I'm in substantial pain both physically and mentally.

I was told recently that I don't belong on this site, I prayed I didn't. But it appears in my case the stickie, intial nueros, emg tests were all not relevant to me and EMGs too early. I don't mean to frighten people or be rude, but just my case.

My physical exam today was horrendous in comparison to only a few weeks ago. Pics of my split hands are attached for reference or if people think I'm exaggerating (confirmed on both sides, and not ulnar neuropathy as thought). Atrophy in 4limbs, torso, tongue, neck confirmed and clear clinical weakness and failures were found all over. When I asked if it was MND, I was told yes they have grave concerns. I asked how certain based on the exam, and was told highly likely.

Mimics ruled out.

I'm only 32, supposed to be getting engaged to my beautiful girlfriend and starting a life with a house and kids. I have no idea at any age how people deal with this. It's too much.

[photos deleted by OP request]

This isn't the progress or news I wanted, and the fear is over whelming.
 
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Nikki J

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I am sorry to hear this. How are they proceeding to verify this? If you are in hospital they should be able to do an emg to confirm their suspicions. What were the qualifications of the person who said this? Consultant? Were they a neuromuscular specialist?
 

TippiLeigh

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Mike, you sound like you’ve been down a long road. I’ve read your previous posts. Hang in there! It stinks. I wish there was a faster way to diagnose MND so people wouldn’t have to go through this torture of back and forth.
 

Mike12345

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Thanks for the replys, I was in a bit of a state so was hoping I hadn't sent the previous message but alas.
It is super difficult the time it takes, turns u crazy then hits like a cement truck.
Nikki it was a team of two separate neuros (not sure there exact special area), they are sending down the head of the muscular team shortly.
I think they are keen on a biopsy. As my presentation has been somewhat abnormal they think that may give a clearer picture.
Will wait and see.
 

Mike12345

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Genetic testing was mentioned as well.
 

Nikki J

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Those both sound like reasonable things if you haven’t had them before. It sounds like they still have a few diagnoses under consideration. Hope the neuromuscular doctor can give you more information. Good luck. Let us know what happens
 

Mike12345

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Genetic testing happening but don't know what they are looking for exactly.
My split hands and tongue point away from any type of genetic condition.
I'll update later. Appreciate the support.
 

Lkaibel

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Hi Mike, I am so sorry to hear this. I remember when we were right where you are now. Remember please that even If it is indeed MND, your life is not over right now. The support even just right here is great.

in my thoughts.
 

Mike12345

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Thank you for your kindness. I just ignorantly thought I would have Soo much more time, and always be healthy and happy.

I'll be finding out the official DX when I head back in a weeks time.
 

Bestfriends14

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Please update the forum when you find out a diagnosis. You've had 5 clean EMGs over a year or more, and also show no signs of ALS. As such, I'm confident that you will not get a diagnosis of ALS. If you hear this very good news, I do hope you can concentrate on a path that will prove more fruitful in finding you answers. Life is short and concentrating on a single disease that you do not evidence having, can stop you from finding out what it is you may have, and waste previous time.

Best of luck and in a week, please post the conclusion/summary part of your latest EMG.
 

Mike12345

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Hi,

Running diagnosis is possible MND. Emg had changes, but what is most telling for the diagnosis is the physical exam. Weakness, fasics, wasting and flaccid muscles in all limbs, face, torso.

Said I can wait for another EMG down the line, or have a biopsy which will be 100%. I can't wait so am doing the biopsy. I asked if any chance of anything else, was told very unlikely, but this will be definite.

Thanks for the assistance and kindness of all, but this will be my last post..I'm absolutely devastated and don't want to be reading about others pain, or reading from past PALS who have passed. It's too much.

I'm done, adios.
 
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nona

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So wait, you came here to share your story with us but won't stick around to clarify your diagnosis or let us share our journeys with you?
 

Bestfriends14

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Please, do share your diagnosis. Did he/she prescribe riluzole? Would you mind posting the EMG conclusion/summary potion that says the diagnosis? What was the discussion? What are next steps after the muscle biopsy and when is it scheduled for?
 

Nikki J

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For future readers what I understand is that there is no firm diagnosis yet. The emg was not diagnostic. given a choice between waiting and repeating the emg at an interval or having a muscle biopsy in hopes of finding something diagnostic the op chose the latter.
After 37 posts they have chosen this time to leave the forum. . Posting the outcome of the biopsy would be have been helpful to future readers. We can not force people to tell us outcomes but a number of people myself included did answer his threads in good faith

closing thread
 
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