Fascics, atrophy, weakness, crampiness, EMGs, etc.

Status
Not open for further replies.

Rickey

New member
Joined
Apr 19, 2005
Messages
4
Hello all, I am a new member who has been through testing and have been told by people who should know that I don't have als. And yet, I just have trouble accepting it because my symptoms are so suggestive of early limb onset als. My right thumb, esp the extensor pollicis brevis (on the meaty palm side) has been twitching constantly for 6 mos, fine twitching that is almost always there, the odd twitch elsewhere in the right hand, along with this light pain that isn't a cramp. This muscle is smaller a little than on my left hand and I am right handed and don't know why this reverse of the normal asymmetry should be so. The assessment at the well-known ALS clinic was about 2 and a half mos ago and nothing has really changed, other than a subjective feeling that the right forearm tires more easily. But clinical testing for weakness was normal as was the neuro exam in general. The EMG showed occ fasc. all over my right side, inc hand, arm, leg. , also the twitching thumb had one repetitve discharge which certainly scared me, but they thought it was of no significance. Nothing else on EMG, mild carpal tunnel bilat which I have no typical symptoms of. So it has been about 6 mos of twitching and a smaller muscle in the hand which happens to be the twitching one, which they aren't calling atrophy, but I don't know how long it's been that way, obviously for a while since it hasn't changed and no other hand muscles look smaller. I just keep checking and worrying, testing the strength, waiting for some kind of obvious sign that something really serious is going on. I mean, am I nuts or what? How long do you have to wait before you can blow it off on benign fasciculation-cramp syndrome which is what I have been told I have? Thanks for your patience.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Rickey. First of all where were you tested? There are a few Motor Neuron Diseases that can present signs and symptoms of ALS. Multi Focal Motor Neuropathy is the one that one doctor thought I might have. An auto immune disorder that will have fasciculations as a symptom and general muscle weakness. Not a nice disease but not fatal for at least an average of 25 years. Washington University in St. Louis Mo has a very good Neurology Dept and I found the information there a bit technical but not so bad that you can't get a good picture of what they are talking about. You still need to ask your doctors what is going on but you can ask informed questions. Try this link. The site is pretty complex but look for motor neuropathic and ALS related topics.


www.neuro.wustl.edu/neuromuscular/index.html
 

Rickey

New member
Joined
Apr 19, 2005
Messages
4
Hi Al, I was tested at Health Sciences Centre, University Hospital, London, Ont. by Dr. Micheal Strong, who is certainly well known in Canada as an ALS clinician and researcher. So, if he looked me straight in the eye and said "You don't have ALS!", maybe I should just accept it, hard as it is. Something just doesn't seem right, though (although it doesn't quite seem right for als either, what with the absence of weakness, the normal neuro exam, just basically the persistent fasics in the one spot and the strange light pain and the fatiguability of the forearm). I mean, there is no way anyone can diagnose als in me using the standard criteria, so going for another opinion could only lead to either a negative opinion or even worse, an equivocal one, where only time will tell. At least right know, I have a expert opinion telling me not to worry. It is still very hard, but if I can get through another 6 mos. without definite changes, I think I will be able to get over this from a mental/emotional standpoint.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Well Rickey I'd say that you were tested in one of the top places in Canada by one of the top ALS Docs and if he says 'Don't worry' I'd be doing my darndest to not worry. Give it more time. Something might show up later but live for today. Don't worry about the things you can't change. Try to stay positive.
 

Rickey

New member
Joined
Apr 19, 2005
Messages
4
Thanks for your encouraging words, Al. I know some people have much more to worry about. I've always been a "worrier" so it doesn't take much to set me off. I'll keep y'all posted as time passes.
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Hi Rickey,
I’ve met Dr Strong a few times and he is definitely one of the top ALS researchers in Canada if not North America. Given that however, have you sought a second opinion?
When I was diagnosed, I had no less than seven other opinions-it was a matter of disbelief.

ALS can mimic several other neurological conditions, some of which are treatable. My advice would be to seek out other opinions if for nothing more than to ease your mind.

I agree with Al when he said live for today! This is so very true. People spend far to much time worrying about the future or the past, stay in the moment.

In terms of being a ‘worrier’, have you looked into meditation? It has certainly worked for me!

Good luck, Rickey!
 

mannco74

Active member
Joined
May 7, 2003
Messages
78
DX

I spoke after Dr Strong at a symposium here. On listening it would seem he has an international reputation and very well equiped to make best possible DX (after my own neuro that is). No system is infalable but you should buy a lottery ticket tonight. All the bet
chris
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
City
Uxpatch
Hi Rickey:
We've worked with Dr. Strong on some of his research trials and found both him and his clinic to be exceptional. I personally don't think that you will get a more informed opinion on ALS than from him. In addition he's a nice guy and has excellent taste in wines... and dessert goodies!
I'd say good luck, but I think, if you've been passed over for ALS you're probably already lucky...

CHeers
T.
 

Rickey

New member
Joined
Apr 19, 2005
Messages
4
Thanks to all of you for your encouragement, I've been away on a short trip for a few days so haven't checked this site for almost a week. I found a picture of myself holding a small Xmas present with my right hand, taken about 18 years ago. The size of my thenar muscles looked the same then as now, although it wasn't a close-up, but maybe that issue is not relevant after all. Still, I can't stop worrying, and I don't know if another professional opinion will help. I mean it's possible this is benign fascics plus the carpal tunnel they found plus chronic repetitive strain injury, set up into some kind of chronic self-perpetuating, gradually worsening syndrome. Would you recommend the neuromuscular clinic at Sunnybrook that some of you attend? Are they part of the University Health Network at U. of T. or are they separate? I see a hematologist at Princess Margaret for an unrelated condition and wonder if Sunnybrook is part of that group of hospitals.
 

Neli

New member
Joined
May 10, 2005
Messages
2
Re:

Hi,
I've been surfing the web looking for answers...
How do I get to talk to Dr. Srtong? my dad has als?
Neli

[quote:72b756b793="TBear"]Hi Rickey:
We've worked with Dr. Strong on some of his research trials and found both him and his clinic to be exceptional. I personally don't think that you will get a more informed opinion on ALS than from him. In addition he's a nice guy and has excellent taste in wines... and dessert goodies!
I'd say good luck, but I think, if you've been passed over for ALS you're probably already lucky...

CHeers
T.[/quote:72b756b793]
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
City
Uxpatch
Hi Neli:
Dr. Strong is at University Hospital in London Ontario. Try contacting his clinic there.

CHeers

T.
 

Neli

New member
Joined
May 10, 2005
Messages
2
Re:

Thank you very much
Neli
Cheers to you also

[quote:4be385a73e="TBear"]Hi Neli:
Dr. Strong is at University Hospital in London Ontario. Try contacting his clinic there.

CHeers

T.[/quote:4be385a73e]
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Ho There,

Our Doctor was Dr. Strong in London as well. Not only is Mike a great doctor, he is a genuinely nice guy. He always had time to answer all of our ongoing questions and gave very freely of himself. In face, the entire ALS team is wonderful there. They are all compassionate, friendly, and so caring. They work with such high levels of adversity and illness, but, we always found our trips there to be so positive. They truly are a great bunch of people. Hope you have the good fortune to meet with all of them and get some support and help from them. Wishing you all the best.

Stay Strong,

Carol
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
I am waiting nervously at home while my husband is in London seeing Dr.Strong. My husband went up yesterday and is beeing seen this morning. We have been waiting a few months to see this doctor. I could not go with my husband as I look after an elderly family member. I did not sleep much last night. We seen two doctors who say als and probably als. They say Dr. Strong is the best, I am hoping today that this doctor will say no he does not have this illness. In answer to your question though I would say if this doctor told you, you do not have als I would believe it.

hope's wife.
 
Status
Not open for further replies.
Top