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hawkid

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Joined
Oct 2, 2015
Messages
6
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Country
UK
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Hi All,

I posted back in October as I was having some worrying symptoms. My symptoms have progressed and I am still no closer to a diagnosis.

Current symptoms:
My issues began in my left forearm 10 months ago. This is by far the most affected region but symptoms have spread to other muscles, including my right arm and both hands.
My left forearm is very uncomfortable, the muscle is sore (burning sensation), it feels weak (fatigues quickly), I have constant fasciculations and occasional cramping. I have lost muscle - the diameter has dropped from 29cm to 24.5cm over the last 10 months. The worst symptom is myokymia... As soon as I partially engage the forearm, the muscles shake and ripple uncontrollably under the skin. As soon as I relax the muscle it stops.
My right arm started to feel bad 6 months ago. I feel the same horrible sensations as the left arm(soreness, burning, weakness, fatigue). I have had periods of intense fasciculations on this arm but they are not continuous and muscle size has been inconsistent. I did lose some muscle but I have been able to put a lot of it back on recently with weight training, even though my arm still feels horrible.
Both arms hurt when I type, hold my phone to my ear, hold a glass of water etc.
Both hands are shaky and cramp occasionally.
Progression seems to have been mainly down the left side of my body (apart from my right arm) and I now have symptoms in my left shoulder, back and more recently in my neck. Myokymia is visible in all of these muscles to some extent and fasciculations are constant. My right side is less affected so far.
My legs feel reasonably strong, although I do get a lot of random fasciculations and occasional myokymia.

Treatment
I am being monitored regularly at the Oxford MND clinic. I have had 2 EMGs, both of which were clean other than fasciculations. The last EMG was back in December. The NCS were normal. Lumbar puncture normal. Blood tests normal.
I still pass all of the tests in the clinical examinations and have no visible upper motor neurone symptoms. My reflexes are slightly diminished.
My neurologist can see the thinning of my left forearm, fasciculations and myokymia, but other than that there is no physical evidence for him to work with. I am not 'clinically' weak and my muscles are not severely atrophied at this point. He believes that I do not have MND, suggesting that my left forearm muscle would have wasted much more quickly if it was MND. He suggests that I have a random condition that will eventually go away.

Questions
1: How quickly do muscles atrophy with MND? My left forearm is pretty small now and I have seen a 15% decrease in diameter over the last 10 months. Would I really expect a faster loss than this?
2: Do many people with MND suffer myokymia? All of my muscles ripple and shake with they are engaged.
3: Is anyone aware of other people who have similar symptoms to the ones I have described where the result has been a random neurological condition that has alleviated in time? I find it hard to believe that my body can recover from what it is going through right now.
4: My last EMG was back in December. Do you think it is worth having another one now? My neurologist said that EMG only picks up MND in 60% of patients but it would give me some peace of mind if it is still clean.

Thank you in advance for your time in reading my post and answering my questions. I do appreciate it.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,596
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Rather than waste my time answering all those questions I will simply say that you don't describe ALS in any way. That means you should not be trying to get us engage in this when you are working top doctors who are telling you it is not ALS.

We are here for the terminally ill and people caring for them.

I'm sorry for what is happening, but we are ONLY here to deal with ALS - that takes up everything we have!

Good luck, keep working with your doctors even though I can see it is hard in limbo.
 
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