Diagnosed 2021

[JP112]

My spouse was diagnosed with ALS in 2021 after every test came back clean other than EMG. After diagnosis another doctor said it could be PLS. Symptoms started with weakness in fingers and hands, then turned into a balance issue and now cannot walk alone or use arms/hands enough to be independent. She is wheelchair bound other than walking with help to the car. Cramps and twitches seem to be the worst of the pain. Cramps are in the throat quite often and very scary for her. She was tested for Lyme and it was negative other than a couple bands showing active/old infection but wasn’t enough to be a “positive” test. She is currently on treatments for lyme but hasn’t seem to be making any improvement. I was seeking information/encouragement on what we are going through.

 

[ShiftKicker]

Hi and welcome to the forums. Please feel free to post your questions and we shall endeavor to answer them. There is a Resources section with some links to information as a jumping off point. Is your wife being seen in an ALS clinic?

~F

 

[lgelb]

I'm sorry about your spouse.

Treatment for an old Lyme infection (at best) is unlikely to improve her health and could make it worse -- the antibiotics and supplements used are pretty intense. There is a lot of junk science out there about bacterial reservoirs that mimic ALS or require lifelong treatment. It just ain't so, but there are boats in the water bought and paid for by it.

As an example, after I was diagnosed with Lyme, I never converted to "completely negative" status, but I stopped [traditional] treatment after an appropriate duration and am fine. Likely, if my titers were drawn today, I'd still look like I had some level of infection.

Is she on medications or physical therapy /range of motion exercises for the cramps and twitches? How is her breathing and eating? Staying ahead of the ALS/PLS continuum seems like a better focus than hitting the Lyme rewind. And at any reputable clinic, ruling out or treating Lyme is considered as part of the initial diagnostic process.

 

[JP112]

Her initial Lyme tests were negative at her neurologist appointments before the ALS/PLS diagnosis. That diagnosis was basically given after every possibly of causes of symptoms were ruled out due to negative tests. We were told about getting further testing for mold sensitivity and specific Lyme bands I’m sure you are aware of what I’m talking about since you referred to it as junk science.

When we thought it was possible that a Lyme infection caused her symptoms we wanted to seek any possible treatment as the thought of ALS or even PLS diagnosis in her 20s was absolutely devastating. We are still hopeful the medication would help make improvement and she is also doing physical therapy but we had no idea that If it was not a Lyme type infection causing her physical decline that the medication could be hurting her. We were told that people had came in with her symptoms and been treated and make physical improvements. Some couldn’t walk and got back on their feet. It just was hope in our lives.

But she is about 4 years into symptoms. Been in a wheel chair for about a year and she is speaking fine. Slow speech but is eating and breathing fine. She yawns a lot and it causes throat cramps.

 

[Nikki J]

Who is it that is telling you these things? What are their credentials? There are sadly people who prey on PALS and CALS

I am not sure if you are saying her current status is proof it isn’t mnd? Because there is no question about my diagnosis. I have genetic ALS. After ten years I can do everything she can and a little more. Some of us just have slow progression. That said, did you get teo opinions that concurred from ALS specialists? Everyone should but especially someone so young