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jjrd

New member
Joined
Jan 21, 2017
Messages
4
Reason
Loved one DX
Diagnosis
01/2017
Country
US
State
NY
City
New York
Hi everyone. First timer here. My wonderfully amazing, kind, loving, totally AWESOME husband has been diagnosed with bulbar onset. My heart is shredded ... shattered ...

Our nuero gave him an RX for Nuedexta which he is eager to start. My husband is currently on a host of vitamins and antioxidants (started in anticipation of getting the diagnosis) and wonder if okay to take Nuedexta in conjunction with this sort of vitamin cocktail?

Our doctor is not in today so I can't ask him and the Nuedexta literature is crazy overwhelming.

Thank you in advance. My love and strength to you all.
 
I have bulbar onset and have been taking Nuedexta for 6 months. I didn't have pseudobulbar affect for which it is primarily prescribed. I take it because it helps my swallowing. I used to take vitamin supplements with it and didn't notice any problem. You might want to check to see if any of his prescription drugs might have an interaction with it. It works well for me. Bill
 
Thank you Bill!!!
 
My husband's doctor who prescribes Neudexta also has him taking a multivitamin, 5,000 iu D3 (split into 2 doses), and 5,000 mcg B-12 each day. My PALS also has bulbar onset and feels like Neudexta is of tremendous help.

Glad you found your way here, jjrd, but sorry you even had to come looking. It is a lightened load when shared here, though, and you'll find great community and advice. Welcome.
 
Thank you for your reply. I am so lost ... and feel like this will be a wonderful place to connect and learn. I am happy to her Nuedexta is helping your husband. Do you think his high dose D and B12 are too? We are on them. just not as high. Again, my sincere thanks for your reply and supportive words :)
 
You can look for interactions here. Sorry you find yourself here; let us know how we can help.

Best,
Laurie
 
I take Nuedexta 3 times a day for Pseudobulbar affect and it works great for me because of laughing and crying issues. It has decreased since taking it. I wish you and yours all the best.
 
Do you think his high dose D and B12 are too? We are on them. just not as high.

jjrd, I frankly don't know what is helping my PALS and what isn't, but we're following his current doctor's advice.

~He knows Neudexta does help because if he misses just one dose nearly everything makes him cry.
~He takes the high doses of D because that's what's required to keep his blood levels in the optimum range.
~His doctor indicates there seem to be good results from the higher levels of B12 for ALS patients, so we figure he's got nothing to lose taking it.
~He also takes medical marijuana because he had immediate improvement with speech, swallowing and ease of breathing upon his first dose and his doctor called it "neuroprotective."

I wish there was more empirical evidence for each of these, but he's done relatively well over the course the disease on this regimen. We'll just never know how he would've done on any other. The very best to you as you also navigate through ALS waters.
 
4tloml -thank you so much for your reply. My husband is on high dose D and B12 shots, but thinking we may up the 12 dosage. Interesting about the med marj .... how has is speech improved from it?

Thanks - I am so grateful for this forum and wonderful people like yourself who answer :)
 
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