Diagnosed Tuesday

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Nikki J

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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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@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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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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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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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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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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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.
 

kerivoo

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Apologies for not posting regularly. I'm not sure if there is a set number of how many times we have to post each week, I'm new to forum groups. I attached a video of my mouth twitching last night and didn't know if this is something that is normal for ALS. I've been having the muscle twitches in my legs/rt arm/lt eye brow/lid area/back-chest area since late NOV of last year, and September I began having twitches in my tongue.

Also, this week I started having a burning pain on the top of my rt foot where it meets the ankle and in my rt calf, and my toes don't want to come all the way up when I go to walk sometimes and didn't know if that was normal for ALS too. The burning pain and foot lifting aren't happening constantly, but I'm wondering if this is going to develop into a constant issue. I see the neurologist again on the 19th of NOV and I've started keeping a list of what happens and when and trying to be specific. I've also started taking videos of when things happen, because I don't feel that I can explain properly sometimes. Is that a good thing to do, or am I being too much? Oh, Monday marks 2 weeks of being on rilutek, I haven't noticed anything different but hoping that it's doing its job.

I'm still having trouble coming to terms with this diagnosis. It still seems like my mind doesn't want to say 'you have this' and it's just straight to 'carry on with life as usual'. I'm still going to school fulltime and working fulltime. But my husband thinks that I should stop working in January when our insurance changes over to him being the subscriber. It took me over 2 years to get the promotion I just got 2 weeks ago, and I don't want to quit. Am I being selfish for that? He works fulltime and has 2 other part-time jobs (national guard and funeral honors). I know I would feel like a leach if he was the only one working, while I could technically still work but didn't. I had to get my neurologist to re-write my FMLA paperwork 3 times because at first he wrote it that I couldn't work, then he wrote that I could only work 4-5 hrs, then I had him put it for 8 hrs and only taking off for appts.

Apologies again for the rambling, and thank you all for taking the time to read my post.
 

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lgelb

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There is no minimum number of posts. Post as much or as little as you want.

Working is kind of the same...you will know when it's time to cut back/walk away, so long as you can be honest with yourself. But if anything is physically strenuous to the point of pain or exhaustion, you should be aware that pushing too hard can speed up progression. Your motor neurons are like a battery now, that will run down.

So though there is no need to draw a bright line for January per se, though you might want to check into your husband's insurance to see if there is anything you should get reimbursed for /hold off on before switching to his policy.
 

kerivoo

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Thank you. My job isn't physically demanding thankfully, it's mostly sedentary.
 

Clearwater AL

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Kerivoo, golly, you been through diagnostic process more than many others.

From a previous reply you posted...

"the als doc I saw yesterday (from IUH ALS clinic) wants to do a repeat EMG in
2-3 mo and every 2-3 mo thereafter to 'gauge the rate of degradation.
( They get paid well to do EMGs)

There's other ways to measure degradation.

I'm sure glad that you are going to a Mayo ALS Center in December.
I'd sure bring up the sentence above to the ALS specialist you see there.
I don't believe you'd have to go through that. He/she probably will concur.

I hope your long journey (as we used to call it) brings a make sense determination.
of your ALS.
 
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