joining the club

[Kelbi]

The second opinion was the same as the first, so I guess here I am.

I'm 32. My onset was 2.5 years ago, in my left arm. It's weak but I still have decent function. Next was the left leg, which led to some spasticity-related walking difficulties earlier this year, but it's doing okay at the moment. The most recent progression was to my speech, which has its ups and downs.

I've sort of suspected it was ALS since the beginning, but diagnosis was slow because there was no progression. The doctor this week described it as "still at an early stage", which I guess isn't too bad after 30 months. He was very empathetic during the diagnosis, which I appreciated.

I've been taking TUDCA for about a month, and something seems to have helped over that timeframe. From what I understand, the clinic is going to set me up with the three Rs soon. Relyvrio has been covered in Ontario for less than a month, so that was lucky timing. I don't think Radicava is covered, but they seemed to think they could get it anyway.

This is all a lot to take in and I'm not handling it super well. I'm glad this forum is here, it helps to know I'm not alone.

 

[Nikki J]

I am really sorry. 2.5 years and still decent functioning definitely sounds slow progression. I think the meds help us slow progression types more because our disease is less aggressive. Fwiw I( and my neurologist) think tudca has helped me and I hd a long plateau. I tke riluzole too and believe that helps as well. 3 rs and slow innate progression will hopefully do a lot for you.

Odd as it soundsI am hoping your genetic testing shows sod1 Even though qalsody isn’t approved there yet Canadians can get expanded access

I know you are in shock but please have hope. There are more drugs in the pipeline. Hopefully more will come out so you can benefit

 

[lgelb]

Sorry to hear the news, Kelbi. We'll support you however we can. Your progression does sound slow and I hope that continues.

Best,
Laurie

 

[Kelbi]

Thanks again Nikki and Laurie. It's always horrible after the appointments but I know I will feel better. My progression has seemed very bumpy so far so I'm hopeful the meds will have a good effect as well.

Nikki, I totally understand where you're coming from about SOD1 - it's better to have something with a treatment than without. At the same time, I'm dreading a positive result on anything. I think I'm still in denial a bit.

 

[Kelbi]

It's only been a week but I'm beginning to get very anxious about how long the medication will take. I'm not really sure what the process is, and honestly I'm not sure the process has started. I'm also kind of wondering if someone mistook my upcoming appointment for the genetic results for a clinic appointment, and didn't schedule me for one.

I have tried to get in touch with the office about these concerns but haven't heard back yet. Just venting here, sorry.

 

[Nikki J]

Can you share your province? I can’t help given that information but maybe somebody can. Resources are different in different places I think.

From a general perspective a week may not be that long. It took longer than that to get a call for my initial neuromuscular visit in Boston and pre Covid. I recently waited several weeks for a call about a new specialist appointment. Boston isn’t Canada of course but my impression is Canada is no better for speed. Still depending on where you are people can possibly suggest support services and tell you their experience with scheduling

 

[ShiftKicker]

I know for the Vancouver clinic, it can take a few days to get a reply, as I don't think the clinic operates every day of the week. My first appointment, I received a list of various clinic people (Admin, NP, SLP, physio, social worker, etc) that I could contact for any issues- with their email and phone#s. If you received a large pile of paperwork and info for your first appt, it may be there's a list in there somewhere with the various people at the clinic. If there's a nurse practitioner or nurse as part of the team, they might be the best person to contact directly.

 

[Kelbi]

I'm in Ontario, Sunnybrook is the clinic. I did get a list like that (it's actually the only thing I got). I'll give the nurse a try next.

Thanks for the advice. This is hard right now.

 

[ShiftKicker]

An entirely frustrating thing to have happen. Any sort of obstacle is going to just add to the overall sense of being overwhelmed.

 

[Kelbi]

I talked with the nurse today. Apparently my eligibility for the meds is going to be based on a lung function test. The soonest that can happen is two weeks from now, and only because earlier I had happened to insist on seeing someone in person for my genetic results. Otherwise it would be a month from now, at my clinic visit. I'm not sure how long the approval (assuming it is an approval...) will take after that.

So I might be paying for the first month of Riluzole out of pocket while I wait. A month's worth isn't terribly expensive, but... I'm beginning to get kind of angry at how slow this is.

 

[Kelbi]

Also, based on my own digging it looks like I won't be eligible for Radicava. I wasn't especially keen on that one anyway, but being refused for it doesn't sound very fun.

 

[Nikki J]

Are all med eligbilities based on your breathing? Here it is usually radicava and I think sometimes relyvrio. I have never heard of it for riluzole. The insurance companies here model their prior authorizations on the trial participant criteria for the expensive drugs on the pretext there is no proof it helps outside of that.

It is incredibly frustrating I know

 

[Kelbi]

For riluzole it's FVC >60%, less than 5 years since onset. Radicava is >80% FVC, less than 2 years since onset, and an FRS requirement. I couldn't find the requirements for Relyvrio/Albrioza.

I haven't noticed my breathing being affected yet, but thanks to a completely unrelated issue I have abnormally small lungs. I should still be over 60% though...

 

[Nikki J]

That is really interesting. Is it just to start? Or do they take riluzole away after 5 years do you know? That would make me VERY unhappy

Hoping your numbers are terrific

 

[KimT]

Well, at least Canada has reasonably priced Riluzole. I get two meds from Canada because, even with the best insurance I'm eligible for, it's less expensive in Canada.

Keep taking the Tudca. I've tried so many times and it just really screws with my stomach.

I'm so sorry you're overwhelmed but, at least, you recognize it. What dose of Remeron are you taking? I only take 15 mg. I bumped it up to 30 and it made me hyper during the day so I'm back down to 15.