Recently diagnosed Bulbar Onset Motor Neuron Disease

[RoxannT]

My husband had the same experience. A few days after the Covid vaccine he started slurring. After many visits and tests, he was finally diagnosed with bulbar ALS today. We are so scared and devastated by this news.

 

[Clearwater AL]

Roxann, you might share some more info with us.... where, who, was it an accredited ALS facility.

It might help us and you if you post more about your husband in the future.

 

[Serenity]

Hello Roxann, I am so so sorry to hear about your husband, and find it very interesting that this started the same way with him, a couple days after the Covid Vaccine, as it did with me. Again, I did report it to the CDC, because I really feel there is a connection.

I'm still waiting to hear from the Mayo Clinic, to get a 2nd opinion...

How long ago did this happen ? I am 6 months in now, and symptoms remain in the Bulbar Region, which of course is tough, esp. with my speach.

 

[lgelb]

There is no evidence of any vaccines triggering ALS. But there are studies showing that Covid may precipitate ALS and that ALS can get suddenly much worse when a PALS gets Covid, along with a boatload of evidence that anyone with pre-existing medical conditions is more likely to age faster post-Covid, including premature damage to their blood vessels, heart, lungs, kidneys, brain and other important systems.

We now know that far from being a complicated cold or respiratory illness, Covid directly infects the blood vessels and so its particles can go and hang out virtually anywhere in the body. So that is why even young, healthy people can get long Covid and/or early heart attacks, strokes, diabetes, etc. as we are seeing.

And a recent study showed that unvaccinated kids are especially but not the only kids affected by these downstream complications, both to a greater extent than at first thought.

 

[Serenity]

I never had Covid. While extreme adverse conditions from vaccines are rare, they are getting reported more, and for those it affects, it is very unfortunate. If not the direct cause, may trigger something lying dormant.

I'm by no means an anti-vaccine individual, but more information may come to light, and felt it was my responsibility to report it.

Thank you for your information.

 

[RKeller]

Hello im Rhett from Louisiana. I'm 55. I am suffering from Bulbar ALS I also had symptoms start with slurred speech. I also had a lot of falling down episodes. I was living in Florida and went to see a neurologist. After examining me he thought I had Bulbar ALS but wanted to have test done. This all started in 2018 with the slurred speech. After several tests he again thought I had Bulbar ALS. My falling down was getting worse and could not work anymore. I had to move back to Louisiana to be near family. I saw a neurologist here in Baton Rouge and she also believed I had Bulbar ALS so she referred me to the ALS Clinic in Baton Rouge.

During this time, within one year I went from walking 3 miles a day to falling down a lot then having to use a walking cane to using a walker and finally a wheelchair. I go to the ALS Clinic every 3 months. They are amazing. When I go I see my neurologist, respiratory therapist, a speech therapist, physical therapist, dietitian, and a palliative care doctor. After doing several tests and seeing my progression they all agree I have Bulbar ALS. I take 23 pills a day plus medical Marijuana. I have trouble swallowing pills and food also. Some foods I can't eat anymore. I have a feeding tube now for when I do lose the ability to swallow. I have lost all ability to walk. I have constant muscle spasms and twitching and cramps. The medical Marijuana really helps me sleep and with the muscle spasms. I use the Tincture drops I highly recommend using it. I have never done ANY drugs in my life until my spasms got so bad and my neurologist gave me a prescription for it. I am just about to lose my ability to talk. I received a eye-gaze computer which is amazing. It does the talking for me. I worked with Team Gleason. What Medicare didn't pay for Team Gleason paid. They are incredible.

Anyone suffering from ALS I highly recommend you contact The ALS Foundation and Team Gleason.

Now I live with my parents and have a caregiver 5 days a week and 8 hours each day. Life can be cruel but God doesn't give me more than I can handle. My faith gives me strength and i have always been a positive person. I also have a great sense of humor. I joke with my friends and family about my disability. It's a great coping mechanism. Some days are difficult and I just want to be left alone but those days are few and far between.

I could go on and on but I will stop now. I would enjoy talking with someone who is suffering from Bulbar ALS also and possibly becoming friends and share experiences. God bless

 

[jamie9372]

Wow! I am so sorry. Our team of neurologist told us to never take the covid vaccine. Pretty scary I tell everyone this. Not to take it.

 

[Serenity]

Hello Rhett. Thank you for sharing your journey. My speach is going quite quickly. Can still get some words out, but is so nasally sounding, is really hard to understand me. I'm waiting yet for the "boogie boards" I had ordered, and have a text to speak app on my phone... So far, I am blessed in that it hasn't yet affected other muscles as of yet, other then the bulbar issues (which those alone have been extremely hard).

Mayo Clinic finally called me on getting a 2nd opinion, but something had not been put through correctly for the "out of network " approval, so waiting for that to get straightened out, and then hopefully get in to see them sooner than later.

I am so glad that you have your Faith, the support of your family and friends, and that sense of humor.

I definitely have my good and bad days as well, but also try to stay positive. "One day at a time" has been my motto since my husband's head injury 19+ years ago, and he is still here. Just wasn't expecting the twist, in that now I am going through this, and have always been his "voice" throughout all his challenges. I just have to use a different way to " speak ", and keep taking things " One day at a time ".

Many blessings to you.

 

[lgelb]

Jamie, I'm worried that your neurology team may not be up to speed on ALS if they are so behind the evidence for the safety of Covid vaccines, which reduce the risk of severe neurological complications such as many people have had from Covid, including worsening of ALS itself.

Here is just one paper on the subject: Participant-reported neurological events following immunization in the Canadian National Vaccine Safety Network-COVID-19 vaccine (CANVAS-COVID) study and there are more links on the impact of Covid on ALS here: Recently diagnosed Bulbar Onset Motor Neuron Disease

 

[Nikki J]

Agree with lgelb. My neuro is all for vaccines ( I have had every covid booster I could get). They are at the Healey center at Massachusetts General Hospital which is considered a top ALS clinic and the doctors are world renowned in ALS circles. The clinic follows hundreds of PALS ( it was 500 a few years ago) and do more second opinions than almost anywhere

 

[downtown21]

Thank you for supporting vaccines and cutting through misinformation, lgelb. I completely agree.

 

[RKeller]

God bless you and your husband. I always say when I'm asked how are you doing.....I respond by saying I'm living the dream or someone's nightmare. Lol. My sense of humor is a blessing. There is nothing anyone can do about my condition so I except it and laugh every chance I get. God bless

 

[steve913]

Serenity,

I just got back from Mayo clinic two weeks ago with my ALS diagnosis confirmed by Dr Eugene Hoffman He is excellent neuro muscular neurologist and yes lots of testing there. It is definitely worth the trip. Contact Dept of neurology,you can self refer and they contact you within 7 business days. and schedule only 3 weeks out so you can get in fast. I recommend the Centerstone hotel its 5 blocks from the Mayo / Gonda building and shuttle runs from 5:30 am to10 pm breakfast included in hotel You can get discount by filling out form from neurology dept so $85 nite instead of $114 Mayo neurology dept is very easy to work with. Good luck

 

[Serenity]

Thank you for the information Steve, and very sorry for your diagnosis.

I'm just waiting yet for my insurance to approve the "out of network " referral, so I can get something scheduled.... A bit frustrated it is taking so long, so will follow up with them this week.

It's really tough with my speach getting a lot worse. I will need to get someone's help with some phone calls. I email whenever possible, but I believe it will take a phone call with Mayo, once I get the ok from my insurance.

Take care ~

 

[Serenity]

So after a very long wait, my insurance company sent me a letter denying a 2nd opinion at the Mayo Clinic. It was mentioned also in the letter that I could go to an in network provider for one, which one of them is Gunderson Health Systems in LaCrosse, WI, that is affiliated with the ALS Association, but I was really hoping for the Mayo Clinic, with their expertise.

Again I was diagnosed with an ALS specialist at UW Hospital, Madison, as having Bulbar Onset Motor Nueron Disease, but just the variant unknown, since only affecting upper nuerons at this time (clean EMG/NCS testing). I have been to one ALS clinic there so far there as well.

I know the ALS Association recommends a 2nd opinion, which I think I should still pursue, but just wanted to get others opinion.

If there is even a 1% chance that it could be a seronegative auto immune disease (all blood work negative), or something else, I would think is worth pursuing.

I am about 7 1/2 months in since this started, and symptoms are still strictly Bulbar, most challenging with my speach, and still cautious when swallowing pills, but can still eat ok. And the Nuedexta helping me with the PBA / emotional issues.

Comparing my symptoms with what I've read from others, it is most likely this is Bulbar Onset ALS or PLS, as my Nuerologist has diagnosed me with.

The only thing that I can think of too, that was not done, was a spine MRI, or spinal tap. Not sure if that should always be included or not, when ruling out other conditions.

Sorry for the long message here, and thank you to anyone, and their opinion. Have a good evening all.