Diagnosed Dec 4.2023

[KatyC]

HI, just diagnosed 12/4 with early bulbar onset.. I had intermittent very mild dysarthria for about a yr.. no one could really notice it except for me.. They all thought it was just my Massachusetts accent.. Even this fall my primary care and first neurologist thought it was my accent.. Until I forced an extended conversation.. Then I got the referral to a speech pathologist who could hear it right away and recommended the referral to as neuromuscular specialist.. I am attaching my emg and the MD notes.. I havent firgured out if I need a second opinion or not.. I currently have Kaiser.. and use the Roseville/Sacramento Kaiser.. the ALS clinic is all virtual but I do have an option to have an in person appt it I prefer..So any input would be greatly appreciated since this is all so new. We are retired and get our insurance through the ACÁ as we are not 65.. So, if needed I can change ins and MD.

 

[Nikki J]

Everyone needs 2 opinions. Preferably two ALS specialists. The plan looks really thorough though. I am impressed if this wasn’t an als specialist.

I would definitely choose an inperson visit and am surprised virtual is the default. Virtual is good when you are an established patient not so much for initial care. Especially as it seems like your diagnosis was primarily clinical

I would want more flexibility in insurance than Kaiser. However if your diagnosis holds and you have worked in a social security contributing job 5 of the last 10 years you can get ssdi and medicare. Be aware the new year means there will be a one year forward shift in your work history. If that makes a difference you would want to start applying asap

You don’t have an accent. They do

 

[KatyC]

Thanks for replying so quickly.. She is the neuromuscular specialist that runs the ALS clinic.. I believe she is the only ALS specialist for Kaiser covering the Central Valley.. I asked about the Virtual thing as I agree, good for F/U but not initial visit.. She said I could see someone in person if I like but it might not be the same person I would see in her virtual clinic. SHe said the clinic is virtual because the Sacramento and california Central Valley is huge with many rural areas so that some pts find it difficult to travel. The distances..

She is a PhD/Md.. So, I have had a nl Brain no contrast Mri, my labs have been No, those being creatine, Kinase, alt, ast, aldolase, the MG labs, neg Lyme, CBC no, THS no B`12 was high even though I dont take b12 but everyone says that is fine..So, I worked in Radiology for 30 yrs.. so I asked why no contrast MRI, I didnt love the answers, those being that they didnt think it was MS or an acute stroke.. I dont have headaches or visual issues or what they thought were signs of a mass.

I worked in Reno forever and know MDs there but the medical facilites and staff are very overwhelmed since a boom in their population since covid.. For some reason they cannot recruit and hold enough doctors so its is months for an appt. That’s the thing with leaving Kaiser, it means I have to find all new MDs.. which if its best I will especially with recommendations from others.. Unfortunately the people I know in the. Sacramento area all use Kaiser.. Our solid home is in MX, we sold our place in Truckee, Ca and travel in an RV for the summer/fall then travel and ski during the winter.. This DX with force many changes regarding where we are as I progress.

The only symptoms I have now is mild spastic dysarthria and I notice my balance can be a tough off when doing something like crossing a stream on a log while hiking.. or skiing…Its fine for everyday walking .. I also broke my ankle in april so my rt leg has been recovering anyways so it has been weaker but improving..The ALS md just told me to live and enjoy my life while I can.. She ordered a base line Pulmonary function test.. and the genetic ALS test but no additional imaging or blood work.. The problem is, I dont know what would be the appropriate test, given my results so far.. and would I just go to an ALS clinic in the San Francisco area? To another Kaiser which might just follow all the same protocol? I can afford some stuff outside the Kaiser system..

and one last question… Do I need a referral from the neuromuscular specialist I have already seen? Sorry, this post seems a little disjointed,, I guess this is just all new to me and we are still adjusting

 

[Nikki J]

If you are staying in the Kaiser system you know best what you need to see other doctors. Whether a doctor in another system wants a referral in the insurance way depends on the individual. They would surely want records - maybe before you are given an appointment Mgh wanted my emg. There is value in seeing a second ALS specialist both to make sure you have had all appropriate rule outs ( as well as imaging usually lots of blood tests). The other issue is clinical trials. You don’t have to be a patient of the place where the trial is though there is an advantage in that the clinical trial people usually work in clinic too and it is nice and beneficial for you. Also a second opinion may have a different approach.

I get not wanting to change doctors but unless you have another significant illness that needs treatment your ALS team is going to be where you have the most health interactions

Please look into recording your voice for voice banking. Also perhaps doing videos. Often people also read a favorite book for future or current grandchildren. People often procrastinate on this. Don’t if you or your family care

 

[lgelb]

I very much agree with a second opinion outside of Kaiser.

If you are still going to travel while you can, Katy, you can certainly assemble a virtual care team but should also identify the nearest reputable hospital in your network wherever you park the RV, just in case.

There is no reason not to apply for Medicare and disability benefits from where I'm standing, if you have enough work credits. That will enable you to select a plan or providers that best meet your needs.

 

[susanjack]

My PALS is fortunately a Veteran and was formally diagnosed by VA Mather. We are also Kaiser and formerly were seen by at Roseville ALS Clinic prior to VA getting theirs up and running. In our opinions, both are very capable of managing care.

Contact our local ALS Association for our area as soon as possible. They are excellent source of free and accurate information for those who are newly diagnosed. Huge source of support for not only PALS but CALS. Highly recommend!

(916) 979-9265
[email protected]

Here’s the SF ALS Clinic with outreach in Sac. We went there as Kaiser patient, zero charge second opinion and they provide much more. Their team is very knowledgeable

Forbes Norris ALS Research and Treatment Center – Satellite Clinic Sacramento
1315 Alhambra Blvd.
Suite 210
Sacramento, CA 95816

 

[monique92760]

I've worked for 40 years in Radiology in various modalities, too!(diagnostic, CT, specials, Cath Lab and bone density) I am in the mnts of NC and am fortunate to be able to use the ALS clinic in Winston-Salem. I was diagnosed on August 3rd this year after seeing 3 different doctors for foot drop which developed in May. The first thing I did was apply for SS.(I'm 63)They gave me disability SS within 2 weeks of applying and Medicare. Do all you can now in regards to organizing your belongings. I immediately purged a lot of my clothes and shoes so my family won't have to and also given lots of things away I want others to have now so I can see their joy while I'm still around! My biggest mistake has been buying items out of pocket instead of researching what things insurance will pay! I found it took me 2 months to deal with the diagnosis mentally but found that gummies help!! And I can't speak for anyone else but my biggest obstacle is the toilet struggle. But installing a bidet has been a life saver! Do your research. And message others with this disease for support!

 

[Honey2468]

Katy I am so so sorry about your diagnosis. My mother is 58 and was also diagnosed with bulbar onset ALS at Kaiser Roseville/Sacramento earlier this year. It was also her Speech Therapist who referred her to neurology after her primary care blamed her symptoms on some totally incorrect things…

I know you must be in shock and feel swarmed with a ton of new information…. I hope sharing a little from my perspective of my mom’s experience might help you navigate things.

(She has recently moved to NV and switched insurance/care teams but her first 7 or so months of ALS care was with Kaiser this year)

I am assuming Dr. Wu is your neurologist? I know she is reputable/educated and great with diagnosis but the guidance my mother and family received from her post diagnosis was not very helpful. Maybe my mom slipped through the cracks with her…I will say I had to step in advocate HEAVILY for my mother while she was under care there.

Luckily, Kaiser has the messaging portal so my mom and I were messaging frequently and calling the office.
Assuming you get a second opinion and your diagnosis is confirmed (Dr Wu can refer you to Forbes Norris for a second opinion or to another Kaiser doctor, my moms diagnosis was confirmed by her second opinion) I wanted to share some things from our experience with that ALS clinic….

Please message them to ensure you’re scheduled for the January ALS clinic either virtually or in person. My mom waited almost 3 months and I find this very disappointing. Even early on it may feel like you don’t need much help from all the providers, but early intervention can be very important!

The providers at the clinic were very helpful and kind! I believe Jen is the SLP, the PT is also named Jen, and Vira is the Respiratory Therapist- all wonderful ladies! I would even ask Dr. Wu to refer you to them for one on one appointments if she hasn’t yet. Obviously depending on your PFT you may not need much from Vira right now… but she prescribed my mother a bipap type machine for sleep which has totally improved her quality of life.

I notice from your notes it looks like she is starting you on riluzole and nuedexta and if you tolerate it Radicava and Relyvrio.

Dr. Wu put in bloodwork to monitor how my mom reacted to the riluzole before prescribing Radicava, and the Radicava before Relyvrio.

If you are looking to start these medicines make sure she has a standing order in for you at the labs and follow up with her after you go in for labwork so she can prescribe them to you in a timely manner. Radicava and Relyvrio are both specialty medicines that will come from Accredo and can take several weeks to get approved through Kaiser. The combination of waiting for my mom’s bloodwork to be reviewed and the approval process with Kaiser took well over a month each time for both medicines, which is unfortunate and I hope you can avoid such long wait periods.

All the medicines prescribed are outrageously expensive, but were 100% covered/free as my mom had reached her Out of a pocket Max for the year. When this amount resets in the new year, the manufacturers of Radicava and Relyvrio both of excellent copay assistance programs for patients with private insurance. Healthwell can also provide a grant to you to cover any gaps.

Others mentioned, but some sort of voice banking or video/audio recording of messages for your loved ones may be something you want to do. Team Gleason can help.

My mom is almost a year post diagnosis and over 2 year since symptom onset…we can still talk to her which I am so thankful for! Her voice is stronger in the morning but it’s her new ALS voice so sometimes it’s a little tricky to understand.

There are lots of organizations that can help you navigate this new chapter (from mentorship to grants to equipment and more) As an FYI we have received assistance and/or guidance from the local ALS Assoc. chapter, Team Gleason, Healthwell, Compassionate Care ALS, iamALS, and ALS TDI thus far…

 

[KatyC]

Thank you so much for the local first hand info.. As you all know, its a bit overwhelming at first trying to get things organized.. I am grateful that I am still healthy and able

 

[BKinMI]

I can't speak to your insurance but I also am bulbar onset. I noticed symptoms in Feb/March 2023 and diagnosed in mid Aug 2023. At this point my speech is basically gone. I didn't expect it to go so fast, it seems like it was only a month from recognizable to really hard to understand.

Everyone is different so there is no saying that will happen to you but I wish I'd done message banking (saving personal messages in my own voice) and voice banking (creating an artificial voice that is mine and can be used with my new AAC speech devices) right away. I'd start with Jay S. Fishman ALS Augmentative Communication Program | Voice Preservation. And as others have said Team Gleason can also help, they can pay for the cost of creating the voice should you need it in the future. There is no charge to do the recordings, there might be if you eventually need the voice created for your use. The recording of the phrases were done on acapela's site and it was only about 50 phrases.

In addition if you have an Iphone it has the ability to create a (free) personal voice but you need to record 150 phrases for them. The message banking that I did imported to my AAC device no problem.

Finally ALS is one of 2 conditions that allows you to go on SS disabilty and medicare with no waiting period. You want to look into that sooner rather than later. I don't expect it would be retroactive. Getting tests and such approved through my (different than your) retirement and medicare insurance took time but now that I have the diagnosis and am working with the ALS clinic things are moving much faster for me. The ALS association (I access in conjunction with my clinic visits) is providing some equipment and I'm blessed to be in an area that has a private ALS foundation that also helps.

 

[KatyC]

HI again, I was thinking of going to the Forbes Norris outreach clinic for my second opinion..SusanJack, Did they do additional tests? I was wondering if since I am Kaiser if I would just be a full cash pay..since you mentioned there wasn not a charge.. Since it’s close to the ACA open enrollment I didnt want to rush changes and have to start all over again.. At least with Kaiser, the MDs seem to respond to messaging quickly but scheduling a new procedure like my baseline pulmonary function test is super challenging.. Been at it for over a week now..

I don’t know if its just because my symptoms are mainly bulbar.. mild spastic dysarthria, that not much additional testing for ruling anyting else has been ordered or if its just Kaiser.. Not many benign causes for dysarthria..It has not really progressed much in the last yr.. A friend of my families has been treated for ALS for 10 yrs in Mass.,, they finally tested him for Lyme.. so he doesn’t have. The ALS Dx anymore but because he went so long with Lyme without treatment he is still pretty disabled.. I know this isnt common but it happens. 10-15% they say,.

I will eventually convert to medicare.. I was looking at the drug plans since the medications are so $$$.. Its gets confusing.. I will definitely need to spend some time talking to those in the know
Any input is greatly appreciated.

 

[Nikki J]

The medication issue is a big one now that radicava and relyvrio are approved. Before although riluzole is more expensive on medicare having a minimal deductible for medical and no copays if you have a supplement ( absolutely necessary if you have original medicare) made it pretty even.

I don’t know if you get aca subsidies a couple of things if you go on medicare you are still counted in the aca household which will make your spouse’s premium comparatively more expensive. However you are not eligible for aca subsidies if you are medicare eligible. Itis probably something you attest to when you renew. I thought you could stay on aca if you paid full premium but recently someone I know turned 65. They had been paying full price aca but got a letter terminating them. Fortunately they were converting to Medicare anyway. Of course it was obvious they were probably medicare eligible as their age was public record. It would be different for you

People on medicare can’t get assistance for uncovered meds from drug companies as people with commercial insurance can. Thereis a rule forbidding Medicare recipients from getting such help from these programs

If you love Kaiser you could probably stay on it as I think they have medicare advantage programs. I would look very carefully into that though. Needing pas for procedures and equipment can delay care at best. Maybe deny.

 

[KatyC]

Thanks Nikki, my thoughts are the same on Aca vs Medicare .. we get premium subsidy.. my husband is eligible for Medicare in 15 mos .. I will probably re-eval then . I don’t love Kaiser but they serve my needs now .. i know they cover all the available meds for at least 1 yr as long as criteria is met . So we have some wiggle room ..
Thank you for all your help

 

[Nikki J]

I expect you have considered this but of course you would be getting ssdi too. And I am sure you are aware eligibilty is a ticking clock and you would still be eligible if you wait. Once you lose ssdi eligiblity you lose medicare eligibility until you are 65. The als diagnosis does not change this. My sister had plenty of credits but they weren’t recent enough because she had been a sahm

 

[KatyC]

Thanks Nikki, I logged onto Soc Sec and I just kept getting routed to my soc page as I started collecting soc security at 62.. I didnt know if that took me out of the SSDI possibility.. I will have to try harder..see where I can get to or just call them