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Hello
Yesterday I visited my third Neuro in less than a month.
All three suggested without reservation that I am in what appears to be the early stages of ALS.
The reason they are merely suggesting is that I am only effected in one limb.
My EMG's both by two different Neuro Clinics were positive in one limb and negative in the other three.
I am being referred to the ALS Clinic in Vancouver for further Dx.
My initial symptoms and early prognosis (sp) has been fast.
I mentioned fatigue to my Doctor awhile back, but my bloodwork was ok.
Sound familiar?
Tom
shopathonic
10-12-2007, 01:39 PM
Tom--
I'm so sorry to hear about this diagnosis. I wonder if you would mind saying what your initial onset symptoms were--and how your symptoms have progressed since initial onset. It sounds like very little time passed between your initial symptoms and your diagnosis. (Also, would you mind saying how old you are?)
Thanks,
Jeff
Jamiet
10-12-2007, 01:41 PM
Tom, go to the MDA website, look up the diseases.
You may have charot marie tooth or there are other "focal" MD's that only affect certain limbs.
What are your other symptoms. Reflexes? Twitches? Babinski? Hoffmans? Tongue? how fast did this all happen?
rgds,
jamie
Sorry Gord & Jamie
This stuff is really new to me. I'm in shock.
I'm 55 with no issues.
Twitching everywhere for around ten thousand years, but nothing serious anywhere.
I know that random twitching is extremely normal.
If all I had was twitching I would not have worried about it. As far I'm concerned and as far as every single one of my Neurologists are concern, random twitching is closier to normal than not twitching. I'm exaggerating, but the point is twitching is nothing to worry about on it's own.
My positive EMG was very damning.
My Doctor found that my reflexes were too fast and I was having an occasional cramping in my hand.
No pain, no stiff joints, some fatigue but I never missed a minutes work.
Oh, i had some wasting going on as well, but what really got my foot in the trap was all these issue combined.
Jamie, I research that other illness.
Thx
Blizna
10-12-2007, 02:17 PM
Im so sorry to hear that. I pray that its something else, since it affect only one limb.
I dont understand from what you wrote, what brought you to neuro? Which problems (except twitching) do you have?
crystalkk
10-12-2007, 02:26 PM
Hi tom,
Besides the emg, what other tests have they done?
Mri brain
Mri cervical
Mri lumbosacral
spinal tap
Where is the wasting?
Do you have any weakness?
Sorry to hear what they told you, but it could be alot of other things.
ALS is process of elimination. Don't jump the gun to fast.
Crystalkk
I've had, CT-Brian, MRI's C-Spine & T-Spine whatever that means & two EMG's, two blood-work ups.
The EMG's are of course the most fun.
All three Neuro's clearly stated that ALS is the only reasonable suggestion at this moment, but were just as clear about the importance the ALS clinic would play in an ultimate DX.
It appears to be the black hole of medicine.
Other tests include CT-Scan Brain, two MRI's C-spine & T-spine, whatever that means, blood work x 2 & four physicals.
Nothing quite measures up to the two EMG's though.
I have some wasting, poor strength in one limb.
Silly point I suppose, but compared to some of you, I'm getting off easy with so little pain. Maybe my turn is coming up.
crystalkk
10-12-2007, 03:33 PM
tom
what limb is it?
jimercat
10-12-2007, 03:57 PM
Tom,
Very sorry to hear ALS could be looming over your life...
In my husband's case, the results of his EMG were as follows:
"His EMG demonstrates predominantly fasciculations and sparse fibrillations throughout the left upper extremity. Very limited fibrillations with more prominent fasciculations in the right upper extremity, no significant abnormalities noted in the legs or paraspinal musculature."
My husband did not choose to tell me about the beginning of fasciculations in his left hand until they had spread to his upper arm and pecs. The fasciculations advanced from left to right side of body. Now they are in his neck and face. His hand is where it all began. Had he gone to the doctor sooner the results on the EMG would have been limited most lilkely to one area. Not trying to p@#% in everyone's cornflakes, just giving you my PALS results.
To address the pain. My husband experiences pain due to spasms/cramps in the areas that have undergone a lot of atrophy. He almost knocked my FIL out in church one day when a spasm caused his arm to jerk up and back. He had to pull his left arm down with his right! LOL (sorry just picturing FIL on floor next to pew with everyone praying over him...):twisted:
Fatigue was one of the first things my husband complained about. but it was nothing compared to the exhaustion he experiences now. He still gets around and does all the things the doc told him not to do, but hey, he might as well enjoy life while he still can and not sit around and have a pity party right??!!??
Wish you could find another explanation for your troubles old boy. Keep us informed.
Crystal
Right limb.......why?
crystalkk
10-12-2007, 05:14 PM
Tom,
I know it is easier said then done, but try not to worry.
It could be a number of things. and you did not have all the tests possible.
Did the doctors see the poor strength in the one limb...Is it your arm or leg?
HOw fast did this atrophy and weakness occur?
Some hypperflexia is ok as long as it is symetrical. actually a few of the nuero's that I saw are hyperflexic.
My hands and forearms are very weak for me. The AlS specialist still says I am not clinically weak.
My emgs have been ok. I don't understand, I have atrophy in my hands forearms and feet. had almost every test possible and he still says he does not thing I have als.
crystal kk
am still be told by als specialist that he doesn't think I have it. I guess time will tell.
Crystal,
You have something of value, 'your doctors thougts of you not having ALS'
Three consecutive Neuro's looked me square in the eyes and stated very gently that they each thought I was probably in the early stages of ALS.
From reporting to my Doctor to my first Neuro's comment was 17 days exactly.
It all started with a severe cramp that hurt like the dickens and only three cramps since. My family is stunned. I'm the Rock of Gibraltar.
CindyM
10-12-2007, 06:05 PM
Hi Tom. I am very sorry you have to be here but glad you decided to join us. We have a great buncy of PALS and CLAS on this site, all winning to discuss anything that comes to mind.
Welcome to the forum. I am sorry this is happening to you. Cindy
Hi Cindy,
I'm trying very hard not to take this personally, however that isn't working too good.
I'm truthfully a little angry that any of us have to deal with stupid disease. It's like a weird dream. The probable is I wake up every morning still in the same nightmare.
Think about this. They tell me I'm probably Terminally Ill. None of need the styats on my chances. Then, they can't take me off any meds because I'm not on any, they can't put me on any meds, because there is nothing chemically wrong with me, so hello!
I'm sorry alright enough, but what up with that!
A month ago, if I had been killed in an auto accident, not a single person on the planet would have ever know about my condition.
Now, tell just how messed up is that!
CindyM
10-12-2007, 07:49 PM
You are right. It is rotten. It stinks. It is unfair and on top of all of it we need more research and a cure. :cry: Cindy
crystalkk
10-12-2007, 07:52 PM
Tom,
When is your appointment with the als clinic?
I had a couple of reg nuero's tell me it might be but they didn't specialize in that area so I took it with a grain of salt. It is not an easy disease to diagnose and you really did not have every thing ruled out.
you need a spinal tap, mri of brain not just a cat scan, and probably plenty more bloodwork.
As everyone else will tell you on this forum, it's hard not to worry....
But if you do have ALS enjoy every single good day now and don't waste it on worrying because there is really nothing you could do. Trust me I wasted alot of time worrying and I was getting around alot better than I am now and could have been enjoying my life instead of having constant anxiety attacks.
Ask your dr to give you something for anxiety. It will help.
I never even new what anxiety was until I started with my symtoms.
And I still don't believe the specialist that it is not als but the only thing I can do is wait and see.
I am 38 with two small children and it is not easy.
crystalkk
okay, I rant a lot. But, come on for goodness sakes.
If we were a group of 500,000 the drug companies would be fighting over the supply to our cures. But, because we are so few in numbers the effect does not match the cause.
Does anybody know anything about a new drug that is about be tested on a handful of ALS confirmed people?
I'd be the perfect candidate.
No, and I am about ready to declare myself cured, (at least for tonight.) The changes in my symptoms are so subtle that I don't even report them. I am on a six-month review with the ALS clinic, where they said to prepare myself for getting worse but but they also said I might stay the same. I am planning on staying the same. I cannot climb or jump or hop on either foot but at my age I didn't expect to play hop scotch anymore anyway!
Cindy
I find this to be quite interesting.
Were you on the path towards an ALS Dx and your symptoms stopped so to speak?
CindyM
10-13-2007, 11:23 AM
Not stopped, per say. Just came to a standstill. I do feel stronger if I get lots of rest and if my CPAP is working properly. Lack of oxygen makes me incredibilly weak. But the muscle pain and cramps are the same, my reflexes are brisk, and so on.
Only 2 things have not happened again. June of 06 I lost the use of my legs and it took months beore I was strong enough to get up without reaching for assistance. And all last winter I would have episodes of seeing double.
Oh and there are tiny-very tiny- increases in symptoms. Like this time last year I didn't have occasional trouble chewing or chocking. And I wasn't tripping when overtired. But I am at a place in life where I can get lots of rest, and I am used to my symptoms, so most days I feel pretty optimistic.
Thanks for asking, Tom. My ALS clinic says I am a puzzel, one of only about 5-6 such cases they have seen. My theory is some of us have to be part of that small number. Why not me? Why not you?:) Coridally, Cindy
Tom i was like you ,very angry . I think weve all been there too . Now have your wife hold up two fingers now you squeeze them ,she will know if you are weak ,another one is to stick out your tongue and have the wife try and push it back in using a spoon . If you just have a little weakness and not alot .Keep track of it by repeating the same tests at home . This way you can be up to date and see if there is any progression
Geo
Bluenadski
10-13-2007, 05:50 PM
Tom,
When is your appointment with the als clinic?
I had a couple of reg nuero's tell me it might be but they didn't specialize in that area so I took it with a grain of salt. It is not an easy disease to diagnose and you really did not have every thing ruled out.
you need a spinal tap, mri of brain not just a cat scan, and probably plenty more bloodwork.
As everyone else will tell you on this forum, it's hard not to worry....
But if you do have ALS enjoy every single good day now and don't waste it on worrying because there is really nothing you could do. Trust me I wasted alot of time worrying and I was getting around alot better than I am now and could have been enjoying my life instead of having constant anxiety attacks.
Ask your dr to give you something for anxiety. It will help.
I never even new what anxiety was until I started with my symtoms.
And I still don't believe the specialist that it is not als but the only thing I can do is wait and see.
I am 38 with two small children and it is not easy.
crystalkk
Hi there,
this is my point in my mums dx....
she was in hosp for 5 days and they gave her dx of mnd bulbar onset.
Is this possible? From readings i believe it takes at least a week to dx Lymes... which is (even if rarely) apparent in bulbar region!
She had an EMG on her right side by a tech, not a doc.... his feedback according to my mother was positive - and that he didnt see anything untowards!
Very confused in the whole dx process.
Is there anything else anyone can see as being the issue here? I found multi focal disorder - hypoglossal neuropathy and primary lateral scelosis as possibilities.... does anyone else have any ideas?
My mother has a 2nd consultation set up with an als specialist this Thurs.. (only due to my relentless calling, due to our shitty national health service)... so I'm hoping he can shed some light!:???:
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