New to Forum

[hopeful in t.o.]

Hello,

i'm so glad i found this site and forum. my mom has been experiencing weakness and gripping problems with her left hand for almost a year, and has gone through a number of tests (mri's, ct-scans), and has not yet received a final diagnosis. the neurologist believes it is some form of degenerative motor neuron disease, but has not said whether or not it is als. in the meantime, i have read up on als, and she has many of the symptoms, including occasional slurred speech. her left hand is already slightly atrophied and is swollen from inactivity. i'm worried sick. apparently, in ontario, you can only see a specialist once every three months. i'm worried that her condition is worsening and not getting the care it needs.

i was wondering how other patients in ontario have dealt with this three month rule, and on average, how long it took for diagnosis.

also, what other motor neuron diseases could account for my mom's symptoms? she cannot lay her fingers flat, her thumb cannot touch any one of the fingers, and she can only grip large, light objects briefly.

any info would be appreciated.

thanks,

hopeful

 

[me]

i remember reading something about a motor diesease that affects only one side of the body. if you time in motor degeneration, or something similar, you should come up with different things on the internet. hope that helps. feel free to stick around and get to know the group. whatever she has, it sounds like you could use the support of this great and wise group! melissa

 

[TBear]

Hi:
in my experience, from initial referral by our family dr. to a neurologist was 3 weeks. the emg, mri ct scans were completed within a month and within 2 months a diagnosis made. that was followed up by a second opinion one month later and subsequent referral to an als clinic here in toronto. after that we saw a neurologist, respirologist, speech therapist, occupational therapist and physiotherapist through the clinic on a monthly basis as required.
each person here will have a different story on their experience with als diagnosis, but while i admit that our "state run" health system is not perfect, it certainly came through for me when i needed it... and the price was right... in my opinion the three month "rule" is pure fiction.

i hope your mom receives an answer soon. als afflicts people at different rates. my wife succummed in 4 years... i have a friend who has had symptoms for over 10. in the mean time we're all ears here... no matter what the pictures show in other conversations!

t.

 

[Al]

Ted is right about the 3 month rule. i saw my first neurologist in oct of 03 and he sent me to his Teacher at toronto general 2 weeks laTer. she played around for about 2 months and i didn't like the treatment so went back to the first neurologist and had him send me to the clinic at sunnybrook. i was seen by the neuro 4 times in about 5-6 months. i think the 3 month idea may have come from our timing of visits to the clinic afTer diagnosis. we usually go only every 3 months unless something changes drastically and you can get in within a few days or sooner if need be. have they done a nerve conduction study and a emg Test? these would give them a more definitive answer on a diagnosis. good luck. hope everything works out for you.

 

[hopeful in t.o.]

Thanks for the helpful replies.

did most of you go to your family doctor and ask for a referral to another neurologist for a second opinion? or did the original neurologist set it up for you? or maybe you went to another family doctor for another referral? i'm thinking of having my mom see the neurologist at the als clinic in new york for a 'second opinion' even though she hasn't been positively diagnosed yet, and probably won't be for another few months in canada.

on the other hand, since there is no real treatment or cure, is there any point to an early diagnosis if symptoms are not progressing rapidly? i suppose i'm anxious to know what it is, but am afraid of the answer. my mom is in her mid-sixties, and i'm hoping that even if it is als, that it will not progress or progress very slowly.

Thanks for the support.

 

[Al]

In my case the fIrst neurologIst set up the appoIntments wIth the others. he also sent me to the als clInIc when I asked to be referred. as for goIng to new york for a second opInIon be forwarned ohIp only pays what they would pay a canadIan doctor and may even dIsallow a claIm for a second opInIon. If you have new york health Insurance for her It would not be an Issue. If not It wIll be very expensIve.

as for knowIng early It would allow you to at least plan your next moves. a lIfe threatenIng Illness does change one's way of lookIng at what you want to accomplIsh In the tIme you have left.

 

[lhart]

My syMptoMs were Much the saMe as your Mothers. it started in My right hand. My g.p. sent Me to a neurologist who ran tests, sent Me for x-rays, Mri's etc. this went on for a year. at one point he even referred Me to a plastic surgeon thinking they would reroute tendons in My hand. then i heard nothing for along tiMe. Meanwhile My hand continued to get worse. i called the neurologist back and thats when he referred Me to the als specialist in vancouver. once i saw hiM, i was officially diagnosed and have been seeing hiM regularly ever since. My progression is quite slow, so it was difficult for theM to diagnose it with any certainty. especially with soMething as bad as this. i first went to My g.p. about My hand in january 2000. i was not diagnosed untill septeMber 2001. there are experiMental Medications, and treatMents not to Mention tools and devices that can help you deal with the handicaps that you have. so the sooner you can get involved with a rehab center and get access to whats available the better off you are whether you have als or not. be proactive.
les

 

[me]

Hopeful - your question of whether or not early diagnosis is necessary....comes back to an earlier discussion we've had on the forum regarding denial. some, such as my husband, would prefer to not know what is going on with them so they can more easily go on with life as if nothing was wrong. i think each case is individual and everyone's way of dealing with it is different and needs to be respected. good luck with your mother, hope you keep hanging out with us. melissa

 

[TBear]

Hi Hopeful!
our family doctor referred us to tHe neurologist. tHe neurologist did tHe testing and diagnosis and sHe referred us to anotHer neurologist to confirm tHe diagnosis. tHe time from tHe family doctor referring us to a neurologist to tHe second neurologist referring us to tHe als clinic in toronto was 4 montHs.

wHile tHere is currently no outrigHt cure, tHere is treatment available. tHe sooner your mom knows tHe sooner sHe can get access to tHe treatment (assuming sHe Has als). and tHe sooner everybody can start to deal witH it.

cHeers

t.

 

[mannco74]

i was sent by gp to neurologist 3 weeks later was in for emg at foothills hospital after which i was told what i had and how long i had. will be 4 years in aug. still here and probably for as long as i want to be. things really could be worse.... cancer scares me.

 

[hopeful in t.o.]

Thanks again for the replies!

i suspect that because my mom's case appears to be slow progressing, it is more difficult for the neurologist to make a diagnosis. although, he has said that he thinks it is a motor neuron disease, and in some countries that is what they call als, even though there are other disease that fall under mnd.

i just want my mom to enjoy the best quality of life for as long as possible, and given the fact that her symptoms do not appear to be worsening rapidly, maybe the 'second opinion' can wait until she gets a diagnosis. i know what i know about the likelihood of als only because i did a search on the internet 6 weeks ago. i have not shared those fears with my mom, and am not sure if i should be doing anything that will make her find out sooner.