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Quangman

New member
Joined
Mar 15, 2011
Messages
6
Reason
PALS
Diagnosis
03/2011
Country
UK
State
Uk
City
London
Hello. I am currently in hospital awaiting diagnosis of my symptoms. Since last October I have had steady progressive weakness in both the legs and arms. I went into hospital in November and it was presumed to be alcoholic neuropathy as I was a heavy drinker. I discharged myself after five days due to the complete lack of care at the hospital. After much research, I decided to take a high dose vitamin b complex and alpha lipoic acid. Come March, my symptoms have got a lot worse. I walk only with a frame, and that is a struggle and only very short distances, I cannot open bottles or tin cans and I frequently drop things. I have no strength to cut my toenails or fingernails. I have had a brain MRI and thoracic and neck, but not lumbar and all were clear. I have had an ultrasound and that was clear. I cannot wash myself properly. The doctor has said MS or MND. I have yet to see a neurologist due to our disgusting NHS service. Nor have they given an EMG or NCV. It isn't MS, due to the scan being clear. I so hope it's the alcoholic neuropathy, which is curable, albeit many years. However I passed the pinprick test and have no numbness or tingling. I also have no pain. So ultimately, do you think I have MND?
 
None of us are doctors here so it isn't for us to say if you have ALS/MND. All I can say is I hope that you can see a neurologist soon so that he or she can tell you.
Good luck
 
It is truly going to be a doctor who can diagnose you. I hope and pray you get good news. Take care.
 
I saw the neurologist today and he is sure that it is MND. I still have to have the EMG and NCV. This is devestating news. I have no idea how I'm gonna cope. I am completely suicidal.
 
I'm sorry to hear that, I don't know how he could tell you that without the EMG/NVC it is such an important part of the process.
Hopefully they will find something else with the EMG/NVC......
 
Thank you Crystal. I so hope it's something else too, but it's not looking good. I live on my own and am so independent, I can't face losing that.
 
Hi, sorry to hear this. Are you attending King's? They can not diagnose you without andEMG, they can give an indication/informed opinion but not the diagnosis. How long do you have to wait for an EMG, and why the delay?

I know it is hard right now, but as many have posted before the waiting game is the hardest part.

Dani
 
I'm sorry to hear your story. Let's hope it is something else even though it is not looking good.
 
Yikes. I hope you find out better news. A neurosurgeon told me originally, "I think you have MND. I hope to God I'm wrong, but I don't think I am." That set the lovely tone for the next few weeks until the neurologist confirmed that suspicion (with a bit more tact). And yes, I think the three weeks prior to finding out was far worse than the time since for me.

You might want to find a neurologist with a better bedside manner in any case.
 
I have the test results back. (Confirmed by nurse). However they will not tell me the results! They said wait till Monday! How can they do that!? I asked the sister in charge and she stumbled her words and said she didn't understand doctors gibberish, which I'm pretty sure is crap, because it would still have had the diagnosis. I know it's positive, and now I just want to find the quickest and most painless way of committing suicide. There is no way I'm ending up completely unable to move and breath. How dare our bodies let this happen to us. People who murder get a better death by lethal injection. Why can't I who OBEYS the law, get at least, if not better, treatment?
 
Quangman please talk to the nursing sister and tell her what you told us. You need some support and for them to know what a terrible frame of mind that you are in right now. I hope that it isn't ALS--will be saying prayers for you.
Laurel
 
Quangman, I know you are going through an extremely difficult time. Please believe me when I tell you that their is life after diagnosis. Tomorrow the sun will rise and so will you. I know it is not easy but if you give up now then your life is over. Everyone on this forum realizes that life is a precious gift and none of us know when that gift will expire. So enjoy everyday and do not waste your precious gift.

We are all here to support you. Stay strong and keep the faith my friend!
 
Quangman, as a nurse I need to tell you that we just do not have the authority to give a patient test results unless the Dr tells us we can. When I was first registered, I had a patient in a similar position as you. I new the results were fine, so rather than the patient wait till the next day, I told her she was ok. It almost cost me my job. It was a simple mistake from a young new nurse, with dire consequences. The nurses will have no choice in the matter.
As Ted said, things look grim and frightening for you at the moment, but there is life after a bad diagnosis. People here have proven time and time again, that they can smile again, laugh again, and also change other peoples lives for the better.
Best wishes Aly
 
So sorry to hear this news , my dad has just been diagnosed with pbp mnd and has been given 3 months to live , it's scary and freightening , it's such an awful disease but u have to keep motivated and try to stay as happy as u can :)

My heart goes out to everyone with this disease , sorry i don't know alot about it but I am still learning x jen
 
I am only 32, which makes it even harder. I am going to need so much help and support. The worst thing about this disease is the way it just shuts down everything. I would love to know how people cope, and how much depression they have. What makes it worse for me is I live in a second floor flat, on my own and have a family that still believe I might not have it. I am so depressed already and so lonely here in hospital. I am petrified. Please help.
 
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