Status
Not open for further replies.

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
My brother at 13 yrs (early 1980's)had muscle wasting start and is now at the point of hands and forearms wasted, some muscles in legs and back gone.He went from a teenager to now not knowing what he had but this year they finally diagnosed ALS at age 38.He still walks drives, camps and fishes and really has shown no signs of degradation in the last 15 years other than what he has.I recently had trouble with my thumb, thinking carpal tunnel I went to my GP but before I got my apt it got better but I kept the apt and mentioned the thumb problem and my brothers als, my GP sent me to a neuro who examined me and did a NCV and EMG.He says he see's muscle wasting in hands, NCV normal, EMG abnormal with same results as my brother he say's, he did thumb muscle on one hand (20 minutes) and has diagnosed me with ALS.My first thought was am I going to die (I'm 42 with 8 yr old twin boys and a 5 year old princess).He told me it was mildly progressive ALS and he did not think it would kill me, shook my hand and said have nice day ?.I waited a week than made a apt with my GP to hear report, I have muscle wasting in hands,he says he thinks I've had als for sometime,abnormal emg, no sign of wasting anywhere else in body.I asked my GP if this was gonna kill me in a few years and he said no that it might effect me badly when I'm 60 but I was not going to die from it in the near future.Well since this diagnoses my mind has given me more symptoms than I have ever had naturally, at least I hope it's my mind.I just hope my als follows my brothers path and I get to see my kids grow, I'm still working in a labor intensive job and really have no problems other than my mind ( the thumb has never been a problem since).They have me setup for a MRI in 3 weeks than he said he's like to send me and my brother to the ALS clinic in Vancouver.It seems my mind can bring on symptoms (twitches,shakes,sensed weakness) one day but the next day when I'm feeling up they are gone.What a wild disgusting ride this has been.It seems the symptoms move around and come and go from day to day.Truthfully I am bigger muscle wise now than at any time in my life, my weight is steady and looking at pictures from the last 15 years this is the best and biggest I've ever looked, my hands truthfully look no different now to me and my wife than they did 5, 10 or 15 years ago.Could one emg test on one muscle diagnose als and could my mind be hijacking my body because of their diagnoses, can emg's give false abnormals and because of my brother their just being lazy, when I get my mind thinking positive and up beat I feel good but then I look at my family and get so scared I start to feel weaknesses that are not there the next day.I wonder if I could have had a milder case as a child than my brother and that is the damage he see's on the emg now.What would the odds be of my brother having childhood als me having familial als but getting it in my adulthood, lots of this just doesn't make sense.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi twospeed99. I had one EMG that showed abnormal results and I am convinced it was operator error. That test gave an indication that I might have multi focal motor neuropathy. Not as bad as ALS(doesn't kill you for at least 30 years) I thought this was a good thing until they gave me the IGG Infusions and the Cytoxin (cancer drug) pills. Big time reactions and I thought the cure ? was worse than the illness. Don't count yourself out yet. There could have been a mistake. Operator error of the EMG test. If they don't get the probes in exactly the right spot with the right amount of presure they can get a false reading. Unless you notice some real changes wait a while and get retested. I know it is difficult but try not to worry now. You might have lots of time to worry later.
 

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
Abnormal EMG

Thanks GrampAl for the kind words,I thought it was a fast diagnosis based on just the thumb muscle EMG and my brothers history, but once they tell you man your mind just takes over.I've calmed down quite a bit in the last few weeks.The only symptom I can honestly notice is nervous twitches and jolts that are quite sporadic and only at relaxation and a sense of weakness that seems to come and go in my legs and arms.They came on after the EMG so I think they are more likely just my nerves from being so wound up over this.I've had Myoclonus all my life with big body jolts just before nodding off to sleep.When I saw my GP after the EMG I told him the Neuro said I had ALS, his reply was you told me you have ALS, that after hearing my thumb weakness and my brothers history that when I left he was convinced I had ALS even though as he said he found nothing in his examination.I think a diagnosis of ALS is so earth shattering that they should of done a lot more testing before telling me.I challenged him to a arm wrestle but he declined, instead he rolled up the blood pressure cuff and pumped it up a bit then squeezed it to see how high it went then I did it and tied his on both hands.He's 49 but in excellent shape I'm 42 so I'm not that weak with the muscle wasting the Neuro supposedly saw.Also with my brothers survival I wonder about the accuracy of his diagnosis.
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
City
Uxpatch
Hi Two Speed:

Is familial ALS in your family? Have either of your parents been affected? These are that the Dr. would/should have asked you. In our case (spradic form) two neurologists were consulted doing the same tests to arrive at the dignosis. Not to say that you don't have it, but it's wise to have something like this confirmed. thingI would think that 2 cases of sporadic ALS the same family is quite rare.

Good Luck

T.
 

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
Familial ALS

That is an excellent question, There was a case of MS a generation ago but nothing along ALS .I mentioned the MS to my GP and he said it was probably misdiagnosed ALS.No ALS in any other family members or parents.Actually I have done my family tree extensivley and you would think something like this would jump out at you.Your thought of what are the odds of two sporadic cases in siblings is the question, but with no evidence of Familial ALS maybe with my brothers 25 year survival and eventually becoming dormant he has been misdiagnosed.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi twospeed. Al again. I think I'd be asking to go to an ALS Clinic to be tested. If your brother has infact got ALS he would be about the longest survivor I've heard about. I'd be taking him with me as well. Something to compare yours with and maybe get another diagnosis for him too. Try not to worry. They might have made a mistake here. Al.
 

Patsy

Distinguished member
Joined
Feb 16, 2005
Messages
149
Reason
PALS
Diagnosis
09/1998
Country
CA
State
Ontario
City
Kapuskasing
Al is right on with getting you and your brother assessed at a ALS clinic. 7 years ago Dr Vera Bril at the Toronto hospital, was thought to be the best with EMG in ALS in Canada! ? Keep us posted, please.
Patsy [/quote]
 
Last edited by a moderator:

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
longest survivor

He's not just surviving, he walks well, talks well, everything about him is normal except severe muscle loss in hands, (can't open jars, fingers curled some), muscle loss in forearms very noticeable, some reported in feet but really from shoulders down he looks well.He worked right up til last year.He said he remebers it coming on when he was 12-13 yrs and it appears to of leveled around 25 or so and I notice no difference in him in last 15 years.
Lots of this makes no sense.I went to my GP because my thumb was weak,it is better now with no recurrence, because of my brothers history they emg me notice abnormality (big spikes or something) and muscle loss (that I don't see even when comparing to old photo's) and tell me I have ALS after EMG on front and back of thumb muscle only.
My brothers survival, the fact his appeared sporadic (no known history) but if I have it it should be familial you would think.
My only real symptoms now of twitching muscles only started after being informed I had ALS,maybe it is in my head (it was a shock as you know, I've got young kids and a wife and am only 42).They are going to do a MRI in 2 weeks than off to the clinic and the neuro suggested my brother go also but he's lived so long with it he's not even interested as of yet.
I really see lots of room for error and hope and I guess it's better to float with that than drown thinking the worst.Thanks so much for being a sounding board I really need it, yesterday my wife asked if we could just go one day without saying that 3 letter word.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I had Dr Bril for an assessment. She did not do the EMG and nerve conduction studies herself. She had 2 different technicians do the tests on me and the results weren't the same. Operator error? Change in condition over a 2 week period? Who knows? I then went to the Sunnybrook Clinic and had Dr Newell do my tests. He confirmed my original Neurologist's finding. Didn't relish the news but at least I knew where I was and where to go from there.
 

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
Thanks for listening

I'll get my MRI in two weeks or so, than an apt with neurologist and then AlS Clinic in Vancouver.I'll keep in touch and let you know how it goes.Thanks for listening it sure helps. :D
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
My diagnosis was similar to yours - I'm 38 - just went to my doctor at the end of May 2005 cause I had weakness primarily in my right hand which I also attributed to carpel tunnel - a week later after seeing a few Neurologists, an EMG and an MRI I'm told I have ALS.

There is noticeable muscle loss around my right thumb - and the muscles around my Adam's Apple are all funny - but I still feel really strong for the most part...still biking and exercising regularly with no loss of stamina or power...but after my diagnosed I started imagining being afflicted with every symptom under the sun...

At least your Dr's were kind enough to say you should be fine till your 60...I got the ol' "2-5 years and then adios muchacho!"

Hopefully you do not have ALS - but if it turns out that you do have it - you and your brother would make an interesting case study...and provide clues to help us all...

Even though you two are related - it may not be the familial form - I expect that in growing up together you were exposed to the same environmental factors - can you think about being exposed to anything unusual during the course of your childhood? (eg. pesticides on a farm? or exposure to other unhealthy substances?)
 
Last edited by a moderator:

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
childhood exposure

I would have a hard time coming up with anything we would both of been exposed too, we have a older sister, younger sister and two younger brothers who are fine and should of had the same exposures.The big difference is my brothers survival and the fact that for 20 yrs they said they did not know what he had only diagnoseding it last year as ALS (and it was WCB that did this to get out of retraining due to low survival chance with ALS even though he's lived 25 yrs with it).Is the weakness you initially presented gone, mine is now for eight months and short of the phsycosymatic stuff I'm fine.My one EMG on my thumb showed the same results as my brothers which hopefully is a good sign that I have what he has.They called it mildly progressive ALS ?.With the exposure theory it's weird how my brother got it at 13 (25 yrs ago) and I get it now at 42.My GP was also my fathers who died of colon cancer, he is honest about your chances of survival so I know he isn't sugar coating anything and is telling me what he's been told.Both the neuro after the emg and my GP after reading the report said it was mildly progressive and they didn't think it would kill me.The neuro said it is in my hands only with muscle loss and 25 % strength loss but from the wrists up I'm fine with excellent muscle definition and no signs any where else,but you can't help but wonder and worry.Truthfully I question my bros diagnosed and question the speed of my doctors in diagnoseding me based on one emg and my brothers history.The neuro's exact words after reading my brothers file was he is very unique, hopefully I am too.
 

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
ALS and spinal cord

I finally got ahold of my brother today to talk about this ALS.As I said he's lived with it for 25 years and really is doing well except for some muscle loss described in earlier posts.He told me only his neuro has said it is ALS (coincidentaly his neuro's mine also), his family doctor disagree's with this conclusion.My brother had a MRI last year that showed his spinal cord as looking like celery not like spagetti like it should, is this what ALS does to the spinal cord.I told him I was getting an MRI than he wanted to send me to the ALS Clinic in Vancouver, my brother said he was never sent there or even recommended to go there.I hope this is a misdiagnosis, I guess I'll know when I get to the clinic.I feel and look great, with the initial complaint of my thumb trouble long gone, I wish I would never of went to the doctor.
 

Patsy

Distinguished member
Joined
Feb 16, 2005
Messages
149
Reason
PALS
Diagnosis
09/1998
Country
CA
State
Ontario
City
Kapuskasing
Hi twospeed99;
You're a very lucky man, in my books because you have Dr Neil Cashman in Vancouver. He has just moved there, from Toronto/Sunnybrook. He is excellent! I don't know if you have more than one ALS clinic in Vancouver but I would choose the one that he is at!

Hi Al;
When I had my EMG with Dr Bril's office it was initially the senior resident but because of my screams Dr Bril stepped in and took over! The little Chinese lady is also very good with the EMG's in this office. You have to remember that we are dealing with teaching hospitals and sometimes they get a resident to repeat the EMG for practice. I know this because I used to work in the neurosurgical ICU there and sometimes had to deal with Dr bril's service, that was before the amalgamation of the TGH & TWH. Hence there may be discrepancies and also that the EMG equipment can be different from the different ALS clinics?

Patsy
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
City
Uxpatch
The MRI is usually used to look for other causes for your symptoms. The testing dis done to rule everything else out. I am still surprised that you've been handed the diagnosis not having had a complete set of testing done. Ours was done that way and then a second opinion was sought by the first neurologist to confirm the diagnosis.
I truly hope that your are lucky enough to have been misdiagnosed... but if you haven't been... I agree with Patsy... at least Neil Cashman is in your neck of the woods.
Good luck to you and your brother.

Cheers

T.
 
Last edited by a moderator:
Status
Not open for further replies.
Top