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Sonia,does your father attend clinic? My neurologist sent me to another neurologist that specializes in giving the Botox injections. I get them for excess saliva. I did enquire about getting them in the vocal chords for speech but in my case it wasn't recommended, they felt it might compromise...

Thank you for the links.I was in a study with Dr Benatar for a number of years where he did monitor my levels in the NFL test unfortunately I was never able to get the results from the study.

Nikki, spoke with my neurologist yesterday at clinic about NFL numbers. He said that they're still figuring out the relevance of the numbers. He did say that people with MS, Parkinsons, Alzheimers and PALS were seen with elevated numbers. He said that now they're using it as an aid to diagnose...

Denise, I'm curious do you have a feeding tube or are you still able to eat by mouth? I have gotten Botox injections into my salivary glands for excess saliva and find for awhile my swallowing is worse. It's temporary but think atleast for me getting the injections into my vocal chords would...

I started out with limb onset and developed Bulbar symptoms but so far haven't had any respiratory issues. I second what Nikki is suggesting, if you're having any problems swallowing have a feeding tube placed. I had mine placed early and am glad I did. I use it for 90% of my food intake and...

I'll let you know what my neurologist says next week. He did email that the test is new for ALS and they're still figuring out the relevance. He also said that he didn't think that the numbers were significantly different and certainly nothing to worry about. Nikki, I did read that the results...

Has anyone been getting Neurofilament Light Chain blood tests? I just had my 3rd one and am wondering how they use this as a biomarker. I understand that with ALS the readings will be higher and out of the normal range. Mine have fluctuated up and down. My latest one is lower than the initial...

I get Botox injections every 3 months and actually scheduled for my 3rd round next week. I take the injections for excess saliva. It doesn't do anything for speech or swallowing for me. I have found that the affects of the Botox last for 6 weeks. I have had them increase the dosage without...

I've been meaning to comment on this post. It's nothing more than greed, corporate, political and personal. The newest one is the fast food chains that now want the power to fluctuate menu prices during the day when demand is high. I believe that Wendy's would be the first one to implement and...

From my understanding, I get my Radicava from CVS Caremark and they will only dispense the drug in 1 month intervals due to expiration date of it. My insurance requires prior authorization from my neurologist and the prescription is written for 12 months.