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Active member
Jul 23, 2005
Seen the neuro the other day he says my mri is clean and he stands by his slowly progressive ALS diagnosed.My brother has had MND that effected his hands, forearms and throat for 23 years and just last year this same neuro diagnosed him with ALS( read my first post).I asked if this was ALS as in ALS or was he lumping us in with it, his reply was it is the best explaination.He believes it won't shorten my life but I better think of doing something other than truck driving to earn my living as it will slow me down in the future.He believes I've had it for a while and have adjusted with it, I brought some pictures from 15,10,5 years back and he says he can see my hands are bony in some from 5 years ago.He said we are unique and wants to send me to the ALS Clinic in Vancouver.I feel great usually get tired and stiff when I work but I work 14 hours of heavy lifting, but really I feel good other than the mind stuff, I can really bring myself down some times.
I asked him to show me where there was muscle wasting, he said some minor muscle loss between thumb/index and palm side under pinky he can feel bone, did strength test on thumb and said I have minor strength loss, so 2 minors yea.He doesn't see it any where else as of yet.Are all neuro's bizzare people, this guys like that dude that used to to paint happy mountains and cheery sunshine on tv.Well I've been told four times it is mild so I should be happy with that, but I think the clinic will be the main thing.I mentioned some other diseases that mimic ALS and he said I'll never be a Neurologist reading the internet.Now that my anxiety is controlled somewhat I feel 100% better, my hands both feel a little stiff but have good strength, some minor twitching all over that started after I was told so might be stress.Truthfully I think only time will tell how progressive this is, I'll just have gauge it every six months for a year or so and see where I'm at.I used to work 70 hour weeks (5 days) before diagnosis now work 42 (3days), on my four off I feel great, when I work I feel stiff but I lift lots, my hand strength is still pretty good i feel more stiff than anything and my middle fingers twitch back and forth a bit on both hands, every now and then my forearm from wrist to elbow throb, hands are a bit stiff when worked great when at rest.Any how I'll keep you informed as to my saga, Never thought I'd be hoping I had slowly progressive ALS.
I find some of the doctors findings a bit unusual, so head off the the clinic. What does everyone else say about this?
His findings are basically based on my brothers history,which nobody called it ALS for 20 some years until this neuro called it ALS (my brothers family doctor disagrees with this diagnosed), and in my case a single emg of both sides of my thumb muscle on one hand that he said matched my brothers results.About 16 years ago my brother was sent to Vancouver to a specialist to look at his condition and even then they did not diagnosed ALS (whether they had the knowledge then as now I don't know), but it puzzles me as to why his was so long in being diagnosed.He is the only doctor that has called it ALS in over 20 years of studying my brother,he calls it familial but there is no hereditary line other than us two.My brother 2 years ago went on disability due to back trouble,WCB refused to retrain him because of the ALS diagnosed basically saying he would not live long enough to make it worth it, that was two years ago and now they have sent him a letter that due to his continued survival they are going to reassess his case.When I mentioned this to the neuro his reply was someone at WCB misunderstood his diagnosed and just took it for granted he had severe ALS ?, everyone I tell I have ALS to takes it for granted I'm screwed.I told him by diagnosed me with ALS based on his one test he has effectivley screwed me out of life insurance,disability insurance,insuring my business loans, his reply was that is what happens when you put a name to something.Everything that has happened to my brother and now myself pretty much flies in the face of what I've read about ALS.Hopefully I won't have to wait to long for the clinic as so far it has been harder on my mind than my body, but it has given me a great reason to miss work.
Actual report from doctor

I just returned from requesting a copy of my file from my neurologist.The EMG report states NCV normal, EMG very abnormal, ulnar innervated first dorsal interossseous and median innervated adductor pollicis brevis were examined (thumb muscles) show no spontaeous activity,but motor unit potentials identified were very complex in form and long in duration, high in amplitude, consistent with chronic neurogenic atrophy.No fasciculations were detected..His diagnosis on both me and my brother is a indolent form of progressive lower motor neuron deficit and likely an indolent form of ALS which has been non- progressive in my brother and he thinks that will be the case with me.Examination shows mild wasting and mild weakness of the intrinsic muscles of both hands.I got a lot of information out of this that he did not tell me on my last visit.He has already referred me to the ALS clinic in Vancouver.He seems quite surprised in his notes that I can still do strenuous labour.The words on my brothers notes were possible and probable so there is some hope.I actually ran into my brother as I was coming out of the Dr's and he looks the same now as 10 years ago, he has lots of hand and arm wasting, but from the waist down he's fine and walks fine so I feel hopeful for the first time in a couple of months.I just want to watch my children grow and maybe I'm gonna get to.
You just may get to watch the children grow up. This disease affects each one of us differently. Don't give up hope. A positive attitude goes a long way in helping keep us strong. Live, laugh and have as much fun and spend as much time with your loved ones as possible.
After 23 yrs of my brother having this they can still only use the words probable and possible and indolent when describing his ALS.I've read alot as I'm sure everyone does when they are diagnosed.There are MND's that effect upper motor neurons and diseases that effect the lower motor neurons and then their is ALS that effects both.Progressive Muscle Atrophy (PMA) is lower motor neuron loss it causes atrophy, weakness, twitching and can be slow in progression.Primary Lateral Sclerosis (PLS) is upper motor neuron loss resulting in spasticity, soreness, absent reflexes.If you put these both together you have ALS.I'm thinking we might have PMA (Progressive Muscle Atrophy) due to after 23 years my brother still only shows lower motor neuron loss with his atrophy, twitching and weakness.PMA accounts for up to 35% of MND's.My diagnosis is possible indolent ALS causing atrophy, twitching and weakness.The crappy part is time will be the only answer to what it is and if I spend my time worrying about it, well then it wins anyways.Hell of a ride this is gonna be.
what is an indolent form of ALS? and 23 years with doesn't sound right to me.
I am reasonably well read as they say but I'm going to have to look that one up in the dictionary myself.
Here it is
in·do·lent (nd-lnt)

Disinclined to exert oneself; habitually lazy.
Causing little or no pain, as a tumor.
Slow to heal, grow, or develop, as an ulcer; inactive.

So I would think it is a very slow acting varient of ALS.
Not nice to have but better than some of us.
The first definition describes me to a tee, I hope the third describes whatever illness I have.I think there are a lot of questions and having my brother doing as well as he is after 23 years gives creedence to those questions.All I know is as long as there is no definite diagnosis and my bro is still kickin that is a plus for me.My whole diagnosis is based on a abnormal emg of my thumb muscle and what he see's as minor symetrical atrophy/weakness.If my brother has an indolent ALS that hasn't progressed in 15 years and never attacked his legs or upper motor neurons it makes you wonder if it is ALS, there are lots of variants of it though I suppose.I believe in reading my file my brother was first seen and diagnosed in 1989 at 23 yrs by this same neuro that I'm seeing now, at this time he had bad atrophy/weakness, with his hands being described as Simian and clawed in appearance.Since 1990 there has been no real progression with most of his damage happening between 14 yrs to 23 yrs. His hands still function, but are weak.He worked up to a few years ago when his back went on him due to disk trouble, he's about 40 yrs now.He has a boat and camper and never let it slow him down.
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