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JMH

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CA
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Manitoba
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The Pas
Could someone "please" help....my Dad was diagnosed last week with als after seeing a neurologist for one appointment. He told my dad that he was almost 100% sure he had it but would order an MRI. He also told him that he would give him 3 years. Are there no other options for a 77 year old man as far as testing goes? What tests are usually ordered to diagnose this disease? I'm scared - my dad's symptoms are slightly slurred speech at times and he has taken quite a few falls for no apparent reason and sometimes has difficulty swallowing.
His family doctor told him that there was little feeling in the bottom of his right foot and that was likely why he was falling. He lost a lot of weight after my mother passed away last November and has been very depressed. Before that he was very active, farming, caring for my mom, etc. Now he rarely leaves the house.

Any advice would be welcome. I feel helpless to do anything for him as I know so little. Have been reading info on the net to try and learn about als - it's terrifying to hear what people are going through.
JMH
 

marlo

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Feb 20, 2006
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JMH said:
Could someone "please" help....my Dad was diagnosed last week with als after seeing a neurologist for one appointment. He told my dad that he was almost 100% sure he had it but would order an MRI. He also told him that he would give him 3 years. Are there no other options for a 77 year old man as far as testing goes? What tests are usually ordered to diagnose this disease? I'm scared - my dad's symptoms are slightly slurred speech at times and he has taken quite a few falls for no apparent reason and sometimes has difficulty swallowing.
His family doctor told him that there was little feeling in the bottom of his right foot and that was likely why he was falling. He lost a lot of weight after my mother passed away last November and has been very depressed. Before that he was very active, farming, caring for my mom, etc. Now he rarely leaves the house.

Any advice would be welcome. I feel helpless to do anything for him as I know so little. Have been reading info on the net to try and learn about als - it's terrifying to hear what people are going through.
JMH


Hello,
Sorry you have a need to be here but i pray you will find the support that you need to get you thru. The best thing you can do for your dad is to stay as calm and positive as you can. Let him do what he still can do for himself as long as he still feels the need to do so. This way he will feel more alive instead of like you've given up. As long as there is breathe there is hope.
Love and Prayers
Marlo
 

Al

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PALS
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HI JMH. I would assume that in the one visit your dad was given an EMG and nerve conduction studies? Has he been tested for strokes? Some of the signs you describe are similar for a slight stroke. Depending where you live I'd consider getting a Lymme's test. Just a few ideas to bounce around.
 

JMH

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CA
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The Pas
Al said:
HI JMH. I would assume that in the one visit your dad was given an EMG and nerve conduction studies? Has he been tested for strokes? Some of the signs you describe are similar for a slight stroke. Depending where you live I'd consider getting a Lymme's test. Just a few ideas to bounce around.

Thank you AL - Any ideas are MUCH appreciated. This is all so new to me and my family. I don't live in my home town any longer. My sister went to the neur. appt. with my dad. I was just reading about EMG last night on the net. I don't believe dad had this proceedure done. Will find out for sure when I call her. Dad lives 2 and 3 1/2 hours away from nearest facilities where they would do such tests. Brandon and Winnipeg, MB. I don't even know if the neur. has ever dealt with ALS in particular. It's so frustrating waiting for appts. for weeks when time is of the essence. Dad has had the wind knocked out his sails with this diagnosis and I am scared he is going to give up. His neurologist didn't offer much hope. This doctor gave him a 3 year life expectancy (would a doctor do this if he wasn't positive of the diagnosis? - stupid question I guess since last month the doctor he saw gave him meds. for Parkinson's Disease and said they would fix him right up).

We are waiting for results of a CT scan he had on his lower back. The neurologist in Brandon said he would set up an MRI. Haven't heard back from either. Is an EMG done automatically if a neur. suspects ALS? So many unanswered questions. I feel so panicked...

My Dad lives about 20 miles from Dauphin, Manitoba - don't know if there have been any reports of Lyme Disease in that area - there are lost of ticks and mosquitos in the area. Will check into that. Thanks again.
JMH
 

JMH

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Loved one DX
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Manitoba
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familial als

I just thought about my Dad being diagnosed with als - the neuro. said it was familial -Wouldn't this disease have showed up in other family members? I can't recall ever hearing of anyone else in the family suffering with this....
 

kathmc

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Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
Hi,

I am sorry you and your family are going through your dad's illness and that remarkable medical appointment. Have you completely checked this drs. credentials? It took 5 years and 6 neurologist To get my diagnois. I could not walk unaided for the last 3. Maybe he is a genius, totally insensitive or a quack, or all 3. All categories have had a go at practicing medicine.

I think the lyme test is a good idea. I don't know how lyme is tested and treated in Canada but in the states where you live can make a huge difference. I became ill in 85 and got a pos. lyme test 7 yr. ( Dr. didn't tell me he was running it ) later. Took me nearly a yr. to get treated as it is not recognized in Ill. Later I started a lyme support group and learned a lot over 6 years of recruiting monthly programs for meetings. A really good book back then was Denise Lang's Coping With Lyme Disease. Remember that Lyme is called the great imitator.

1. If you pursue testing get acquainted W/ different strains. They are not always limited to one part of the globe, esp. w/ bird migrations. Tests are usually strain sensitive.
2. If your father might have been infected in the past and is only now showing symptoms, a blood test is of limited value. The blood test is most accurate early. The little boogers love to settle in organs and can present an incredible array of neurological symptoms. The best lyme Dr.s here test to eliminate everything they can and will then try treatment based on symptoms.
3. often a permanent, but slight drop in body temperature occurs.
4. There are often co-infections w/ lyme. Ticks tested from birds on migration path (across midwest) sometimes had 2-4 different nasties that a bite from them could pass along.
5. Testing the tick (should you find one in the future) is best way to go. Said tick needs to be alive & well for that journey.
6. Don't believe everything you hear or read. Many opinions, facts and changes. Now that applies to all I've written here as well. All my information is dated. In 2001 I asked other members to take over as 6 yr. long enough to be in charge. Wanted to learn to dance, write poetry and fiction, etc. Really glad I did. Trying to dance today would get me arrested as a drunk!

Best of luck.

Kathy
 

Al

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Joined
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PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
This doc you are going to sounds like a real piece of work. Familial only shows up in about 5 to maybe10% of patients. You have to have had someone else with it in the family or sporadic is what they call it. An EMG and Nerve conduction study are the first tests usually done. Then an MRI to rule out back or spinal problems. A cat scan would rule out stuff like tumours and lesions on the brain. Go onto he ALS Society of Canada website at www.als.ca and look for the Manitoba chapter an see which one is nearest your dad. Ask them to refer him to an ALS Clinic. It is worth the drive to see someone that see's ALS everyday. Sounds like your guy just read the manual last week and missed a few pages. Hope this doesn't get me in trouble but I hope it gets you the help you need.
 

JMH

Active member
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Messages
42
Reason
Loved one DX
Country
CA
State
Manitoba
City
The Pas
Father newly diagnosed with ALS - Al & Kathy

All and Kathy:

Thank you for the good advice...I found a list of phone #'s last night for the ALS Society of Manitoba. I know what my mission for the day is. Have already been questioning this guys ethics and all I did was read some posts and do some checking on the internet for ALS diagnostic tests. Good grief, I thought that was a fast diagnosis. Dad has already been treated for Parkinson's Disease that he didn't seem to have. When I tried to call his former doctor about that diagnosis he wouldn't return may calls....it's sad to think we are left in the hands of some of these.......people for lack of a better word. We were raised to respect professionals - older people especially never seem to question a doctor - I feel so bad for my dad, and my family. It's feels like I'm trying to wade through quick sand.
It means so much for people like yourselves to care enough to want to help. I wish you both the best...and thank you so much again. I am grateful for this wonderful site.
JMH
 
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