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Melodie6220

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Hello. My husband was diagnosed with ALS last Wednesday. We are getting a second opinion on February 1st at the Mayo Clinic. We are completely devastated.
 

Nikki J

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Very sorry to hear. A second opinion is very important so glad you are doing that. Where was the original diagnosis? Are you at an ALS clinic? I think a forward looking clinic is important especially at the beginning. Was genetic testing offered? Were trials discussed?

of course this is a terrible shock. Give yourselves time to absorb. there is life after diagnosis as you will read here. Planning ahead is also helpful so when you are ready look at the resource section at the top.

if you want to share more or have questions feel free
 

Melodie6220

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The first diagnosis was made with a Neuromuscular clinic, but dr was so fast to diagnose. His symptoms are so incredibly inconsistent. Also, a lot of this started after he contracted Covid. We are hoping that it just messed with his system. He has foot drop which was contributed to a pinched nerve in his spine. Slurred speech started after covid. Muscle twitching started after first vaccination.
 

Nikki J

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Covid can certainly cause neurologic symptoms and I did see a case study with someone whose emg showed denervation post covid and wasn’t als but it wasn’t GBS either. You absolutely need someone who can tease this all out because the covid complicates things. Twitching after vaccine is also common.
unless Mayo is reasonably local if the diagnosis is confirmed you need a clinic you are comfortable with
 

Melodie6220

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We do have an ALS clinic where we live. They are already trying to get him to go start treatment, but we want a second opinion. I'm not sure if that is the right decision as I worry he may worsen in the next two months before we are seen.
 

Nikki J

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What treatment? I will say that one of the ALS specialists at Mass General ( my clinic) told me because they believe strongly that riluzole works best started early that they have started prescribing it when they have a high suspicion of ALS but haven’t completed the testing. The other treatment ( radicava) is more complicated because it is iv but riluzole is just a pill.
 

affected

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So sorry to be welcoming you to this place.
I hope they find out it is a complication of covid, in the meantime riluzole would make sense as Nikki says.
 

lgelb

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I'm very sorry, Melodie. Even if he does not have ALS, riluzole should do no harm so long as his liver function is baselined and monitored. If you would care to post his deidentified EMG, we could comment on what is there.

Best,
Laurie
 

jeff9000

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Melodie sorry you’re having to post here. I was officially diagnosed in November- that was after numerous tests: EMG, full spine MRI, blood tests, urine, spinal tap. Then the results were past to Duke ALS clinic for review before an official diagnosis. Not sure if your husband has been through this rigorous testing.
 

JimInVA

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Melodie,

We'd all prefer that you did not need to seek us out. And we'll all hope that a second opinion finds that your husband has something that is temporary and recoverable. With that being said, if you do find the need to continue here, you'll find that you are in very good company. Ask us questions, let us help. Most importantly, know that the two of you are not alone in this.

My best...

Jim
 

Melodie6220

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Hello. I'm back unfortunately. Things seem to be turning for the worse around here. We have hyper focused ourselves on this being induced by possibly Lyme disease but have yet to get our test back. In the meantime, my husbands speech is progressively getting worse and he's becoming winded. I think I sometimes hear his choke on food and drink but he denies that he's having trouble swallowing. This seems to be progressing quickly. How can I convince him to go to the Neuromuscular clinic for further testing? He's afraid that with a dx of ALS he will lose his job. He's showing ALL the signs and they are becoming so much more prevalent. How much time do we have left? I'm so incredibly sad.
 

Nikki J

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whp is doing this lyme test? I have seen a number of PALS” diagnosed “ with lyme by “lyme literate” doctors pay lots of money, get told they feel worse because their bodies are ridding themselves of toxins and then when they are dead the families get told they sought treatment too late.

if this is ALS we still can’t know how fast things will go. Speech and swallow issues often progress quickly but not always.

a diagnosis of ALS should give him protection under the ADA but it depends on what he does if he can keep doing the same thing safely Not having or revealing a diagnosis would seem to make him more vulnerable as they won’t know why he is having issues. If he is slurring people may think he is drunk
 

lgelb

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Hi Melodie, he had a Mayo appt on Tuesday that he skipped? Or it was postponed?

If he has ALS, you will surely want a verified diagnosis for benefits when he can no longer work, not only Medicare and disability income but any disability coverage he has with his employer.

Lyme tests don't take that long to get back from a legitimate lab, but, as Nikki says, there are many quacks in the field. The extent of what you report does not sound like Lyme, which I have had, could account for all that.
 
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