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Dunric

New member
Joined
Jun 5, 2020
Messages
1
Reason
PALS
Diagnosis
07/1998
Country
US
State
CA
City
Lodi
Quite a long time lurker here but a first post for me.
 
Dinric, maybe you could share with us some info of your path to a
confirmed diagnosis of ALS making you a PALS.

Being "long time lurker" you've probably seen where new PALS
often share when - where - and who and whether they are
currently taking part in an ALS clinic.

It would give us info that could be helpful if you present questions
concerning ALS related issues.
 
Understandable, but it’s a long journey which of some details I just can’t recall easily. I will endeavor to fill in some details of which I can remember and some crazy doctors over the years.

Started as limb onset with my left side being weaker. In the beginning, it was foot drop noticeable on the trends of my shoes and such.

it’s been many years and amazed that I’ve held out this long but if Steven Hawking lived long with ALS, I often think “I might beat the odds” but now things are slowing more.

clumsiness is my superpower! (dropped my iPad)

diagnosis was originally called a “Conversion Disorder” with my original doc due to me getting fatigued easily from things I could otherwise do. Followed advice and referral to the head shrinker but didn’t take the sample psych meds that my primary doc gave me.

Had no psych issues he could find but that first doctor that put a Dx of a conversion disorder really made finding the right Dx a bit more challenging. I had a friend who took me to the county hospital and got seen several times and finally, the visiting neurology clinic with specialists from UCSF. After multiple studies ruling everything else out (tests! tests! tests!) I was prescribed Rilutek and then sent to UC Davis for a eval and differential diagnosis and the adventure continues...

more to be added, things happening.
 
Dunric,
Sorry to welcome you here but glad you've decided to join. There is always great information and tips given by all. Even the occasional laughs. Join in.
 
Sorry for your years of frustration being misdiagnosed! Keep being your own advocate and hopefully they'll get it you where you need to be!
 
Dunric, have you had an EMG? If so could you post the Summary/Conclusion at the
bottom of the report.

As you wrote....

"UC Davis for a eval and differential diagnosis and the adventure continues...?

"The adventure continues..." ??

A confirmed diagnosis yet?

I don't mean to be so challenging to your post but people who post themselves
as PALS (and CALS) are follow ups from a confirmed diagnosis.

Maybe you are still on the "path" from what you have written above.

Again, any EMG report with the Summary/Conclusion at the bottom would
be helpful.
 
Hi 22 years from diagnosis wow! Aside from SH I have only encountered 2 people longer than you- one was 23 years and counting - he moved and I lost contact - and someone on another site that was 30 plus.

I look forward to the next installment of your story
 
The Adventure continues... (had butterfingers and got tired of typing, didn’t know there was a nasty 3 day wait limit on a post...)

Yes I did have a EMG and was used for helping diagnose me. Sorry, but I don’t have a copy of my records to share and consider me nervous of sharing such documentation online.

I’m sorry, but I just can’t put much thought together for you guys, but this forum software isn’t too iPad friendly when it comes to trying to correct typing mistakes and it’s frustrating me. I wish I was just more coordinated. (Took five times just to type that)

The reason why I decided to come here is that it’s taking me more effort to breathe and just afraid time is catching up with me. Didn’t think I’d come here to be challenged but I guess that’s the nature of Internet forums these days. Guess I’m just old fashioned.

Will think of more to type when I can figure out how to keep up with everybody (can’t even do that on Facebook) and my second three day post punishment is over.
 
If you are having trouble breathing, do or will you have a BiPAP?

The forum runs under your browser, so your iOS or browser spell checker should work fine. If typing is hard, you might want to look into software, some of it free, for word prediction and therefore faster typing. Dasher is an example. Some iOS keyboards have this capability directly, as well.
 
Dunric, gotta say you're the first to say, "...and the adventure continues" going
down the path to a confirmed diagnosis of ALS.

Adventure? :oops:

On your first post you wrote you have been a "long time lurker"... I'm sure
you have seen numerous posts where EMG reports were posted with
identifying info blacked out.

But... you don't have a copy of your EMG. Just a suggestion.... most PALS
do have a copy for many purposes. Something you might consider obtaining.

Like Nikki wrote.... "22 years from diagnosis wow" No EMG reports?

Then...

"it’s been many years and amazed that I’ve held out this long but if
Steven Hawking lived long with ALS."

22 years into it... Steven Hawking was nearly incapacitated.

So, don't be offended to questions and comments. Your case is very
very unique to say the least.

Hope you get your ipad worked out... many members here work from
ipads.
 
Last edited:
‘Dunric, gotta say you're the first to say, "...and the adventure continues" going
down the path to a confirmed diagnosis of ALS.

Adventure? :oops:

Not an ”oops” Life is a incredible adventure regardless of the cards we are dealt. That’s just the way I look at it. Sorry if that seemed to offend you... ( different strokes, different folks) The crazy adventures I went through to get a definitive diagnosis are long and ongoing, I just can’t recall them all in memory. (Just visited my neurologist yesterday in fact...)

“On your first post you wrote you have been a "long time lurker"... I'm sure
you have seen numerous posts where EMG reports were posted with
identifying info blacked out.”

I used to carry a physical copy of my records and that continued till I ended up in a care home where they pretty much assimilated my records like the Borg and never gave them back. What happened to them you might ask? Your idea is as good as mine. It’s all digital these days and I’m used to physical copies and think only a back woods hospital would still use a paper mill. (lost my train of thought)

‘But... you don't have a copy of your EMG. Just a suggestion.... most PALS
do have a copy for many purposes. Something you might consider obtaining.”

This is something I can try and work on, again, I’m sorry this displeases you but then again, is this a forum or is this becoming a debate? Would you like to talk to my doctor? 🤨...

“Like Nikki wrote.... "22 years from diagnosis wow" No EMG reports?

Then...

"it’s been many years and amazed that I’ve held out this long but if
Steven Hawking lived long with ALS."

22 years into it... Steven Hawking was nearly incapacitated.”

I’m not exactly doing backflips either... 🤔

“So, don't be offended to questions and comments. Your case is very
very unique to say the least.”

I understand that part, but I don’t exactly feel a warm welcome here... 😑



Hope you get your ipad worked out... many members here work from
ipads.
 
Ok, thanks for the reply. If you are now in a care home that explains a lot.

We really have not known your current condition... in a care home home,
in a PWC, breathing assistance? Things that would be typical to the
long path (22 years) you have been on.

22 years into it... Steven Hawking was nearly incapacitated.

I am one reluctant to use the word "Welcome" to ALS but as you may
further explain your situation this Forum will be helpful to you.

Again, your case is so unique and rare to what we typically encounter.
 
Dunric,

Welcome to the Spanish Inquisition.....just kidding.

I just think being atypical generates loads of questions. I'm sorry if we sounded overly curious. Nobody ever needs to post test results but when someone has lived this long with ALS, we're all wondering if your decline was always very slow and how you manage 22 years into it. I met a guy from India who had ALS for over a decade and was still functioning. He exercised every day. If you saw a picture of him, you would think he belonged in a PWC, but he still lifted weights, swam, and did a stationary bike.

I hope you'll stay here. You can ask me questions. I don't mind
 
Kim, " Spanish Inquisition.....just kidding." I don't think you were. :)

I have to give you credit for one thing... you personally know and have met
more people with ALS than many of us put together. :)

Yes, you are probably the "go to person" for him in that his case is so rare
and unique... being the many tests, trials, diets, supplements, drugs you have
done over the years since diagnosed 2015.

I stated... I hope he will find this Forum helpful.

I'm sure he will stay... he's been researching many Threads today.
 
Welcome Dunric!
We have a member here who was diagnosed in 1985 and was a neurology nurse before that.
She doesn't come here daily but hopefully she will find your thread.

It could help also if you start a thread up in the top area of the forum which will give you more posting rights over time as posting here still shows your post count as 0 - it's just a forum calculation thing.
 
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