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myownself

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Oct 1, 2014
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Reason
CALS
Country
US
State
wa
City
bellingham
My husband has family history of als and is terrified of doctors that could confirm his symptoms. What can I do to help him? Where does he go to address his fear?
 
Hi, Myownself, welcome to the forum. You'll find a lot of assistance, knowledge, and support here.

I used to live in Bellingham, and I thought there were plenty of good doctors there. I really miss the view each morning on Alabama Hill, seeing the Bay in front of me and Mt Baker behind me.

We have another user, Music67, who is in Bellingham.

We have several people on this forum who have family histories of ALS. That's a particular kind of fear they experience.

What symptoms does he have?

Have you got a neurologist?

--Mike
 
Hi and welcome Myownself - maybe we've met! I live at the foot of Alabama Hill in B'ham (Born and raised). If you would like to talk please pm me if you can.
 
I am FALS. Our answer will depend a lot on his symptoms. I used to worry every time I struggled to open a jar etc. It wasn't ALS and I knew it but you still think twice when you are FALS. But if he is having real symptoms he should go see a neuromuscular specialist not a general neurologist. Your physician can refer you.
Ignoring it doesn't help and prolongs the agony of the unknown if it is ALS. And needless anxiety if it is not. There is supposed to be benefit to early diagnosis and treatment. I believe I have benefited by getting on medication early. And there is hope for the first round of gene therapy trials for C9 the most common cause of FALS in the next year.
However if he won't go there is little you can do.
Let us know if we can help more
 
when you say family history--do you mean one or several?
 
Myownself,

I meant to mention that our local ALS representative, Oliver Ross at Evergreen ALS (360-733-5222), is the person to give answers to all your concerns as well as connect you to others in the community for support.
 
I have found that when people are truly afraid to talk about ALS, it has to come from some sort of underlying thought that it means radical changes right away. I have found that having someone that you can talk to (whether you know this person or not) can be a great relief.
 
My husband's grandfather, great uncle, father, uncle, and older sister have all died of diagnosed als.

He isn't seeing a physician let alone any kind of neurologist. He's terrified and changes in his abilities are happening quickly. He doesn't want to undergo invasive (read needles) procedures or take multiple medications and doesn't feel confident in his ability to prevent these things while still getting a definitive diagnosis.

His symptoms include numbness and weakness in his feet and legs and instability standing. The feeling he describes is as though his skin is on too tight and this feeling is progressing up his legs into his hips and lower back. His hands and forearms are also affected.
 
when you say family history--do you mean one or several?
My husband's grandfather, great uncle, father, uncle, and older sister have all died of diagnosed als.
 
He isn't seeing a physician let alone any kind of neurologist. He's terrified and changes in his abilities are happening quickly. He doesn't want to undergo invasive (read needles) procedures or take multiple medications and doesn't feel confident in his ability to prevent these things while still getting a definitive diagnosis.

His symptoms include numbness and weakness in his feet and legs and instability standing. The feeling he describes is as though his skin is on too tight and this feeling is progressing up his legs into his hips and lower back. His hands and forearms are also affected.
 
I love Bellingham. I'd never leave for long.

He isn't seeing a physician let alone any kind of neurologist. He's terrified and changes in his abilities are happening quickly. He doesn't want to undergo invasive (read needles) procedures or take multiple medications and doesn't feel confident in his ability to prevent these things while still getting a definitive diagnosis.

His symptoms include numbness and weakness in his feet and legs and instability standing. The feeling he describes is as though his skin is on too tight and this feeling is progressing up his legs into his hips and lower back. His hands and forearms are also affected.
 
Help! I've posted the same message a bunch of times. I cry your mercy! I'll learn to do this eventually.
 
He isn't seeing a physician let alone any kind of neurologist. He's terrified and changes in his abilities are happening quickly. He doesn't want to undergo invasive (read needles) procedures or take multiple medications and doesn't feel confident in his ability to prevent these things while still getting a definitive diagnosis.

His symptoms include numbness and weakness in his feet and legs and instability standing. The feeling he describes is as though his skin is on too tight and this feeling is progressing up his legs into his hips and lower back. His hands and forearms are also affected.

Well, if he feels he doesn't need diagnosis, I can understand that. But if he would want social security benefits, Medicare, and equipment, he'll need a diagnosis and prescriptions. Same for survivor benefits.

This affects you directly. You may need to use everything in your power to save yourself from the economic impact of the disease.

With such a rich family history, a doctor might diagnose him based on frank paralysis without needles.
 
Is there an als clinic close to you? Sometimes seeing a specialist with family history could reduce the need for some testing. I know als is a diagnosis of exclusion but I am wondering if, with your husbands family history ,there might be the possibility of a smaller battery of tests to confirm or rule out the diagnosis? Also, if he is having this much anxiety over the possibility, medication can help greatly. My husband really resisted medication for his anxiety for the longest time until he didnt sleep for days. It was a really bad situation. Try to convince him of that....it will really help calm him.
 
Myownself - I just checked to make sure - the closest ALS clinic from Bellingham is in Seattle (90 miles away) at Virginia Mason Hospital - (for non-VA patients). On this Thurs (Oct 9th) the local Evergreen ALS chapter is meeting noon - 1:30pm at the Peace Health Education Bldg at the far east end of Squalicum Way (East of the main hospital). You might come just for your own peace of mind & support.
 
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