Discussions By Condition: Nerve conditions

Have I got MND(ALS)

Posted In: Nerve conditions 1 Replies
  • Posted By: landofsmiles
  • August 27, 2010
  • 04:45 PM

I now have a neurologist saying I "most likely" have MND Motor Neurone Disease/ALS...the fatal one :-( What a terrible thing to tell someone when they are still not 100% sure.

I have MRI's that show I have degeneration in my lumbar and have bulging discs L3/4 and L4/5. I also have degeneration in my cervical spine they say.

I am at the point where I can only shuffle/stagger along for maybe 50 yards with the help of a stick. When I wake up in bed both my legs are stiff from the knee down to my feet and it takes 5 to 10 minutes of very slow movement to get them to a point where I can roll onto my side and over the edge of the bed then pull myself up onto my feet using a cupboard door handle. I have to be very careful how I move too as sometimes I get incredibly painful muscle cramps in my thigh or calf muscles. I then stagger around and get a little bit more movement after 10 minutes or so. When I walk I have foot drop and also swing the left leg. I find it harder to walk if I straighten up and get pain in my calf muscles when i do which makes me believe that my disc herniations are causing the problems with my legs and maybe compressing my sciatic nerve.

But the docs here won't have it and say my bulges are not a big problem...well L4/5 doesn't look very clever to me but then I'm not an orthopedic>>>

They said my problem was in my neck but when I had an MRI there nothing showed up. I do have some numbness in the 2 furthest right fingers of my righthand and stiffness in my index finger. I have twitching all over now...both my arms, thigh muscles and stomach.

So I was sent for a general EMG and the report came back saying I "most likely" have MND/ALS! :-( I am due to have another more specialised 2nd EMG at the end of September. I am praying that they have got this wrong :-(

Meanwhile I have a deep tissue and stretching massage every day and when the woman who does it presses about an inch either side of L4/5 I nearly hit the roof it is so painful. I guess this is her pressing against my sciatic nerve? I am just trying to give myself hope that my lumbar damage really is causing the stiffness and pain in my lower back and what is going on with my legs as the docs with their talk of MND are giving me a death sentence.

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  • I am diagnosed...and on a one-way tripNeurologist did 2nd EMG today and my weakness has progressed so much since the last test and with the other tests I've had that he agrees with the other neuro and is sure I have Motor Neuron Disease (ALS) :-(He's going to get me the drug Rilutek which is the only known drug that has any effect on the disease and slows the progression down a little in some people and extend life by maybe 2 or 3 months. As he pointed out although I only started to see the symptoms 7 or 8 months ago I am most likely already at least a year or 2 into having the disease.The diagnosis is no surprise to me as with what has been going on in the last few months with me and what I've read I was expecting this outcome. Feel a bit numb right now as I've only known for 2 hours.Guess I will just have to make the best I can of each day under the conditions from now on. What a bummer when everything else was going so well for me.Live each day like it could be your last! has a greater meaning to me now.
    landofsmiles 3 Replies
    • September 29, 2010
    • 02:01 AM
    • 0
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