Just Diagnosed

[Music67]

Charlene - my heart goes out to you in this life challenging time in your life. I've had this disease about 3 yrs. now but still live alone (engaged, though). I'm exhausted just visualizing raising 2 teens! I hope you get plenty of family help! I see that we are neighbors. We have support meetings the 2nd Thurs of every month at Peace Heath hospital's Education bldg at noon so please come if you don't have anything locally. I will be keeping you in my prayers.

 

[lgelb]

Quinine is sometimes used for spasticity. There can be safety issues with large doses and heart issues. Tonic water has small amounts. Some people also use other drugs. But you don't say whether your pain is due to spasticity or something else? For example, an ache from dragging your leg due to weakness is less likely to respond to quinine.

 

[MaxEidswick]

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,

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> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

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also remember the rules:
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#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

ALS is about living, not dying!
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ok well, we take what we get and be glad for what we have
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If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.

like all the others, sorry to meet you here but welcome!



Max - Saturday, January 24, 2015 3:15:04 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Mediasmart]

Just a couple questions on tests...anyone chime in.

Why both a CAT and an MRI? Als is diagnosis by elimination...yet no lymes test...what other blood work ups did you not have?

Last your progression is meteoric..what do your neuro guys have to say about that?

 

[Clearwater AL]

I could help but notice that your progression is rocketing. December 1st 2014, your 1st Thread, you were asking about symptoms then 1/16/15 you posted you have been diagnosed with ALS after seeing 3 Neurologists, EMG, MRI, CT and Elisa Tests. You're very lucky, (as I wrote to you before) being we've had many members from Canada write about long wait times concerning appointments just for tests and Neuro appointments. You are lucky to have sailed through the diagnosis process so quickly... especially for Canada from what has been written previously. Hope your progression slows down.

 

[Nikki J]

I suspect Charlene ( who did have a lyme test Media read her first post again) does not feel so lucky to have such a fast progression that she sped through the diagnosis process. I can think of others who were diagnosed shortly after onset , it does happen.
Charlene, I too hope your progression slows down

 

[anderkling]

Thanks, Nikki. I too hope the progression slows down. The nurse at the ALS clinic, who seemed quite heartless to me, told me I have fast progression, and it will stay fast progression to the end. Then I heard from someone else who works at the ALS clinic who said that's not true. It often starts fast, then slows down, speeds up, slows down, etc. I had extensive blood work done, but not tested for heavy metals. Maybe I should insist on that? Elisa test for Lyme, but not Western Blot.
-Charlene

 

[affected]

Wow Charlene, did the nurse lose his/her licence for saying that to you?

In Australia, and I believe most countries, nurses are certainly not allowed to make prognoses like this to any patient.

It is true that progression can speed up and slow down at different times. That's why one can never give an indication of life expectancy to and PALS.

 

[anderkling]

Thanks, Tillie. This nurse has worked at the clinic for years and is very tight with the leading neurologist. What she said was pretty devastating, and totally out of line. Everyone I tell that to is appalled.

 

[lgelb]

Charlene, the "linear progression" notion that your nurse articulated [fast/slow progressors starting and staying that way] is based on looking at time to certain milestones, like BiPAP, PEG and death, which are obviously skewed by practice patterns, health care access, care-seeking, patient preferences and the like; and also at FRS score decline over time. The FRS' own statistical relationship w/ survival has declined due to better supportive care, and it was never a great scale anyway.

Anyone reading these threads also knows that many people alternate between little losses over time and sudden nosedives. Lots of neurons have to die before function is perceived as lost. But muscles also work together.

I would communicate your concerns about the nurse to the clinic director. PALS deserve more than a cookie cutter.

 

[Clearwater AL]

Charlene, in previous posts you wrote that a Neurologist called you on the phone three times seeming so concerned with your symptoms I believe from just you sending an Email to him. The kind of information you are being given from a nurse should really be face to face discussions with your neurologist who once was so concerned he called you on the phone three times. In a few of my appointments I've tried to ask the nurse a question/her opinion and I've always got, "The doctor will discuss that with you." With your fast progression you need your conversations to be with the Neuro.

I can't speak for Canada but in all of my Neuro appointments, EMGs and even NCS the nurse walked me to the examining room, brought up the computer, asked a few questions (during this time is when I tried to ask those questions I mentioned above) and left. The Neuro himself would come in and after I'd go to check out. The same for the tests. Again, maybe it's done much differently in Canada.

 

[anderkling]

Thank-you, Laurie and "Clearwater." I don't think it is different in Canada as far a protocol is concerned. The neuro definitely should be the one to relay such information, not the nurse! The problem is this particular clinic. I heard from another ALS patient that the nurse gave her the diagnosis! (The neuro told her she had probable ALS, but the nurse told her it was definite.) The leading neuro/clinic director speaks so highly of this nurse, who said she is like part of the director's family. I realize this should be addressed, but I question how effective it would be. And I probably shouldn't be writing all this on an open forum!

 

[lgelb]

I would at least communicate w/ the clinic director. If the nurse continues inappropriate prognostications, I would then forward the correspondence to the chief of service/department, whatever they call it at your hospital, w/ a copy of the physician-in-chief/administrator. I would also communicate with your local support organization. There is no nurse (or physician) so mighty that s/he cannot be counseled to listen to her better angels.

 

[anderkling]

Thank-you, Laurie. Good advice. I will do that.

 

[djbailey]

Welcome to the forum.