Diagnosed Tuesday

Nikki J

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Mar 22, 2012
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10,848
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
We certainly have had people go to the various Mayos. Are you going to Rochester? I do think you need to get confirmation especially as I believe only one neuro said ALS? It is my opinion anyway you need 2 ALS specialist university level opinions to concur before accepting a diagnosis. About 10 percent of initial ALS diagnoses are overturned and although some were by non specialist neuros not all were. Everyone is human and diagnoses can be wrong and they can be missed. I think it is fine and appropriate to let your husband do the appointments for you.

one question to ask the doctor on Friday if he continues to be sure of your diagnosis is whether you can start riluzole It doesn’t usually need a prior authorization. I hear Mass General where I go has started prescribing it for people for whom their clinical suspicion is high while they are waiting for all the tests to come back
 

JimInVA

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May 29, 2014
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965
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Lost a loved one
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04/2014
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VA
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Poquoson
@kerivoo - Please DO hand over what you are willing to do to your husband. We men like to "fix" things. Unfortunately, some things simply cannot be fixed, no matter how much we'd like it to be otherwise. Giving us tasks lets us feel useful and helpful. It helps fill that void of helplessness when we're unable to make it better. I wish you well as you navigate the maze of doctors. I know how frustrating it can be.

My best...

Jim
 

kerivoo

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Sep 29, 2021
Messages
11
Reason
PALS
Diagnosis
9/2021
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US
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IN
Thanks everyone. Had neuro appt with diagnosing MD today and he prescribed me rilutek, he said 'the window was closing for me to take it', that it's meant to be taken within 18 mo of when symptoms began. The only thing I'm hesitant about, is the side effects and how it's going to effect my performance at work and school. When we went to go pick it up, the pharmacy in my town said that it would be in Monday though, because they don't have or keep it in stock and have to get it from another pharmacy. The diagnosing MD said he had spoken with the neuro doc that I went to get 2nd opinion from and he said that he wasn't impressed with him either and apologized for having me go there. I told him about the appt with the Mayo clinic (DEC) and he said if it was ok with me, that he wanted me to go to the Cleveland clinic instead (same distance). He said the last time he had been at the Mayo clinic, it seemed more like an automated service line than patient driven care and that he didn't want me to wait 2 months for an appt. He was also confused as to why the 2nd opinion MD had repeated the same labs that he had just ordered less than 3 weeks ago as well. He said he thought he would definitely repeat the EMG and order labs that he may not have thought to order. (they're al resulted now, and still neg/normal). Is getting a first or even 2nd opinion such a harrowing process for everyone?? He told my husband and I again, that even though he is 99.9% sure that I have 'sporadic ALS', he urges us to get a second opinion because it's such a devastating diagnosis and he doesn't want to be right. He scheduled me for another appt with him in 1 month and said that I'll have more lab work done to monitor organ function while on this med. Gotta give him some serious kuddos for empathy. He filled out paperwork today also for me to get a handicap placard since walking is such a chore and takes me forever. I still have to get FMLA paperwork sent to him, although I'm still leery about letting my job know, I know that my boss will keep asking questions for me continuing to take off work for neuro appts (have to give a reason when requesting sick leave for appts). Apologies for the lengthy post, I'm just wading through all this and hoping that by sharing everything everything that's going on, someone who has more experience with this can say "hey that's right" or "hey that's wrong", advice that I know I need and am extremely grateful for.
 

Nikki J

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Joined
Mar 22, 2012
Messages
10,848
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It is normal that the pharmacy has to order riluzole. The twice I didn’t use mail order the same thing happened ( different pharmacy chains) and also happened with my sister. I have been taking it right along and only had some mild nausea for the first couple of weeks so don’t expect bad side effects. They happen of course but most people I know tolerate it. The earlier the better is what I was told

do you now have an appointment at Cleveland Clinic? I am sure they are fine but also consider Wash U in St Louis, Hopkins or Mass General if you are willing to travel. All three have excellent diagnosticians

speaking of sporadic ALS if the second ( third) opinion concurs you should have genetic testing which is now being recommended regardless of family history especially if you are young

conserving energy is good so embrace the HP plate!
 

kerivoo

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Joined
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Messages
11
Reason
PALS
Diagnosis
9/2021
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US
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IN
Thanks Nikki! I've already had the genetic testing done, that was done in the first round of labs. Long story short, I didn't know my real dad growing up and after I had found him, he passed away a year later-before I had gotten the chance to see him in person. When I went down to funeral home and meet other family at his house afterwards there was a wheelchair and when I asked they said it was my dad's and that he couldn't walk anymore. No one really knew what was wrong with him (was told he was tight-lipped kind of person). So doc thought it could be genetic for my case and tested. It came back neg.
I haven't done very much (if any) ALS clinic shopping. I had thought of Mayo clinic first because I used to work in a pathology lab and we sent a lot of specimens there for specialty tests and they were excellent in their turn-around time and the range of testing they perform. Whatever clinic I go to, has to be within reasonable driving distance because I can't fly for medical reasons, and I only about a week's worth of leave for the whole year. The doctor said he would call me next week and let me know when my appt will be at Cleveland clinic. I did go on their website and check out the covid restrictions they have in place so I don't violate any rules, since every hospital (at least in my area) has different restrictions in place. And my mother-in-law and already told me that she will be going to this appointment along with my husband and she won't take no for an answer. She's a 4ft-10 package of tnt, but has a heart better than a saint.
I'm glad most people tolerate the medicine well. My husband calls me the 'side-effects queen', he says if there's 19 side effects listed, I get 18 of them. Mild nausea I can handle, I'm just worried about starting this during my first week of training in the new position I just accepted. I want to be at my best for performance and learning. I've spent the last two years jumping through hoops to get into this position and I don't want to cause any doubts in my boss that would make her regret her decision in selecting me for it.
How does the mail-in thing work? And how long does it take to get medicine? The only mail in pharmacy I'm familiar with is the VA, and I don't qualify to use their services yet (connected through veteran spouse).
 

Nikki J

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Joined
Mar 22, 2012
Messages
10,848
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Mail in depends on your insurance. My current uses caremark My doctor orders it online And they send it by usps. I had a prescription sent Tuesday. Tracking says it is coming today. It is very easy andI have always found caremark reliable. I once had a plan that called riluzole a specialty med and I had a horrible experience with a pharmacy that delayed multiple times ( first they lied and blamed my doctor). Then procrastinated and then finally said they sent it but they did not and my insurance said they never billed. Too late I googled them and got horrible reviews. Fortunately there was another choice and they were fine. Research if you have to pick a specialty pharmacy but I think it is unusual for riluzole to be obtained from one. It requires no special handling and it is just a pill
 

kerivoo

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Sep 29, 2021
Messages
11
Reason
PALS
Diagnosis
9/2021
Country
US
State
IN
Oh my gosh!, I'm sorry you had such a horrible experience and I'm glad you have something better now. I picked up meds yesterday from pharmacy in my town and they said to call ahead 5 days before I'm out & they'll reorder and have it ready for the next refill. So far it's only made me a tiny bit nauseated, but nothing that would stop me from doing anything I would normally be doing.
 
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