Old 01-03-2018, 09:57 AM #1 (permalink)
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Default Newly Diagnosed at Mayo Thanksgiving 2017

I was diagnosed Wed before Thanksgiving 2017!

I went to Mayo believing I had NPH (normal Pressure Hydrocepheous) I had been to 4 local Neurologist and all felt it was NPH, but because Spinal Tap and draining 40 CC of spinal fluid didn't help, we ere playing "stump the doctor" EMGs on Legs were normal and 4 MRIs (3 back and Brain) were inconclusive!

We were sucker punched with the news from Mayo! It only took them 48 hours to come to conclusion!

I don't know much about PLS or FALS. My father died at 93 in nursing home. He was diagnosed with NPH at age 85, but surgery was not done because of health concerns. We now wonder if he had FALS.

I just got approved for Radicava and am on Riluzole.

My problems started with my falling after stepping in a hole and breaking foot behind big toe. The doctor felt the healing of break was causing balance and walking problems. 4 months later after not improving, we started with neurologists. I had all symptoms of NPH (Balance "gait", Slight incontinence and memory problems).

I can still "walk" with walker, but rising from a chair is almost impossible without my lift chair. Upper body strength is diminished but still OK. Sitting up in bed is very difficult! I bought sleep number bed, but it doesn't get be completely up!

We are tearing out 1 bath to accommodate roll in shower. We had a ramp built to enter house and have contracted for a incline wheelchair lift to climb 3 steps in our split level house.

We have been busy in the 6 weeks since diagnosis.

Medicare covers Radicava, but not home infusion! Searchlight told me since we live on $2K per month Social Security income we qualify for assistance. They did not ask about our investment income. (only when we sell?)


I will have a port installed after first round of Radicava?

Any advice or help would be appreciated!
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Old 01-03-2018, 10:54 AM #2 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

Welcome and sorry you have to be here.

There are a couple of threads on radicava in the general subforum ( top one). There is discussion about ports and getting one after the first round is not unusual. You want to know you tolerate it before having an invasive procedure

Mayo is excellent but if it is your only neuromuscular opinion you might consider confirming it with a second one.

If you are concerned about FALS you should discuss it with your neurologist and see if genetic testing is in order. I think it is somewhat unlikely because
85 is old for ALS ( not impossible). It is even more rare for FALS. The 2 most common forms are SOD1 ( manifests in the 40s) and C9orf72 which in males is supposed to be fully penetrant by 80- meaning if you have the defect and live that long you will be sick.
8 years is a long time to live with ALS especially in an elderly person who generally progress and die faster.

However if you have children or siblings it would be kind to address this and relay the doctor's opinion.

There is lots of information here if you want to browse and people are happy to answer questions.
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Old 01-03-2018, 12:36 PM #3 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

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Sorry you received that report from Mayo. I am sure this is hard on you and your loved ones. I wish you the best. Shocked you had a normal EMG with symptoms and now being diagnosed with ALS. Did the technician or reviewer mess up?
The EMG performed in Memphis was in July and only done on legs. Mayo did both legs, back and arms

I am not naive, But I hope Mayo is wrong!
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Old 01-03-2018, 12:59 PM #4 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

I was diagnosed at Mayo Clinic in Rochester, Minnesota just a few days before Thanksgiving 2017 six weeks ago.

I'm a 72 year old obese male.

Several of my cousin's on my moms side have had it.

I'm not sure yet but I think mine is FALS.

I did the genetic test but haven't heard back.

I chose against the meds for now because of the potential side effects and the benefit not being that great in a lot of cases.

It may be a big mistake not taking the meds.

Maybe not.

I'll never know.

I am zero meds but i might look at them in february when i go back in for another look and follow up exams.

I'm doing nothing for mine.

They didn't seem to mind.

I broke my fibula in my leg in half last year riding my moped on wet grass.

I was supposed to stay off from it and bed rest and I went into the potato harvest and was on my feet constantly for months instead.

It seems to have healed good.

It was a clean break I think that might have helped.

Did the ALS somehow come from that.

A year later i got ALS.

Interesting.
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Old 01-03-2018, 02:42 PM #5 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

RomeoSC, I am very sorry to welcome you here.

Mayo certainly has a good reputation. They would not have made this diagnosis without some sound reasoning behind it.

With any disease as serious as this, I think it is important to get a second or third opinion. In your case, I double up on that recommendation. Your diagnostic path does not follow the kind of path I would expect. Especially with a clean EMG there is hope that another diagnosis may be possible.

In the meantime, welcome. You will find this place populated by an amazing group of people.

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Old 01-03-2018, 08:08 PM #6 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

Quote:
Originally Posted by DetroitLakesMN View Post
I was diagnosed at Mayo Clinic in Rochester, Minnesota just a few days before Thanksgiving 2017 six weeks ago.

I'm a 72 year old obese male.

Several of my cousin's on my moms side have had it.

I'm not sure yet but I think mine is FALS.

I did the genetic test but haven't heard back.

I chose against the meds for now because of the potential side effects and the benefit not being that great in a lot of cases.

It may be a big mistake not taking the meds.

Maybe not.

I'll never know.

I am zero meds but i might look at them in february when i go back in for another look and follow up exams.

I'm doing nothing for mine.

They didn't seem to mind.

I broke my fibula in my leg in half last year riding my moped on wet grass.

I was supposed to stay off from it and bed rest and I went into the potato harvest and was on my feet constantly for months instead.

It seems to have healed good.

It was a clean break I think that might have helped.

Did the ALS somehow come from that.

A year later i got ALS.

Interesting.
Amazingly I was there Mon. and Diagnosed Tues and left on Thanksgiving Day! I am 67 and obese also
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Old 01-03-2018, 10:36 PM #7 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

Once you have an ALS diagnosis, however many docs you have seen, it's important to go to a(nother) neuromuscular disease center and get "re-diagnosed" or diagnosed otherwise.

The reason is, with an ALS diagnosis, you are not undergoing treatment that could in any way be construed as "curative." But some neurological and muscular disorders are very treatable. So the difference is important -- duh! And some are very rare genetic disorders, that even major universities may not see often.

So when we say "seek a second opinion," we don't mean, stop the process if the 2nd neuro you see says "ALS." We mean, two unaffiliated neuros should tell you that you have ALS, before you begin the process of convincing yourself, and beginning to deal.

Best,
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Old 01-03-2018, 10:49 PM #8 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

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Originally Posted by lgelb View Post
Once you have an ALS diagnosis, however many docs you have seen, it's important to go to a(nother) neuromuscular disease center and get "re-diagnosed" or diagnosed otherwise.

The reason is, with an ALS diagnosis, you are not undergoing treatment that could in any way be construed as "curative." But some neurological and muscular disorders are very treatable. So the difference is important -- duh! And some are very rare genetic disorders, that even major universities may not see often.

So when we say "seek a second opinion," we don't mean, stop the process if the 2nd neuro you see says "ALS." We mean, two unaffiliated neuros should tell you that you have ALS, before you begin the process of convincing yourself, and beginning to deal.

Best,
Laurie
I did go to Wesley ALS clinic in Memphis and also have had wonderful support from ALS.org

I talked to my 2 neurologists who did not diagnose ALS, but eliminated all other options and hinted it might be ALS... no one wanted to say it outloud unless they were certain. Technically, I am on the cusp (just over line) with tests.... I would be tickled if the $50,000 we are spending to make house accessible is wasted and I woke up and diagnosis is wrong!
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Old 01-03-2018, 10:59 PM #9 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

Well, "on the cusp" probably counts...and you sound fairly well in.

Sometimes I say things for newbies more than the OP, Memphis, so please don't take that too personally.

As for potato farming, DL, please be careful -- falls can do more than break a bone.
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Old 01-03-2018, 11:18 PM #10 (permalink)
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Default Re: Newly Diagnosed at Mayo Thanksgiving 2017

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I would be tickled if the $50,000 we are spending to make house accessible is wasted and I woke up and diagnosis is wrong!
I agree. I would be ticked too, until the initial shock wore off. Then I would be over the moon happy I did not have ALS.

Steve
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