NEWLY DIAGNOSED with Bulbar Palsey

[Janie H]

Hello,
I am Janie and just got the diagnosis this week, I was told that if I do everything that the doctors say that I could have 10-20 years. Prescribed Rilutek (Very expensive) starting to work on the twitches already, I hear that a generic may be available soon, any one know about this?

 

[Nikki J]

Hi Janie. Sorry for your diagnosis. Yes I have heard from several people that the generic is in the pharmacies. Are you paying out of pocket or do you have insurance to help you? I don't know how much it is if you have to pay it all. It should be better than brand but may not be cheap nonetheless.
Good luck

 

[Nikki J]

Post went to moderation bottom line yes it is available

 

[Cricket]

Hi Janie, sorry to hear about your news. About your statement: "...if I do everything that the doctors say then I could have 10-20 years" Are you refering to medical invasive procedures or the Rilutek? Hope you are doing ok.

 

[Janie H]

I paid $462.00 with insurance, price with no insurance was $2398.00. I found out today that the generic price will be 900 without insurance, hopefully more affordable, thanks for answering my post.

 

[Janie H]

They want me on the Rilutek, work out ,eat right, I take a lot of vitamins (15-20 daily) thanks

 

[pearshoot]

why? do they now have more data that extended use of this medicine may extend your life expectancy more than 2-4 weeks? the other three fine. consider doing a zyto test to determine exactly what your body needs for maximum health.

 

[Txgirl]

I'm so sorry you have to be here. I was also recently diagnosed. My doctor didn't recommend the Rilutek. He told me about it but basically agreed with me the cost vs. the 2 months it could add to my life wasn't worth it.
Also you may want to take it easy on the work outs. Resistance weights & over working the muscles is not good. Short walks and ROM are recommended.
No dieting because you want to maintain the muscle & weight you currently have. You don't want to lose weight.

 

[pearshoot]

no dieting, maintain weight but make your diet healthy. good body health is the most important thing we can do. ku med cntr neuro said if you can get rulitek for $200 take it if not forget it, not worth financial drain. va would provide it to me but no way will I stick them for up to $2500 per month. there is now the first ever study of strength exercise, endurance exercise, range of motion exercise. I am a strength exercise advocate but you must listen to your body and back off as you weaken. if you didn't exercise before probley best you don't start now

 

[Nighthawk]

Try too keep your actual weight or...even better, try to put on more if you can.
Diet is not advisable for PALS as you are continuously losing bulk muscle mass.
My Nurse dietician at the ALS Clinic told me that a high fat diet actually could help increase my survival because the nervous system makes more efficient use of it for the Motor Neurons still left alive. She even told me the high cholesterol isn't bad for PALS.

When I was healthy (several years in th past), I always tried to avoid fats and high cholesterol. As a PALS, it's all the opposite. :razz:


Carlos

 

[CRR10]

I am sorry to hear about your diagnosis, but I am a firm believer that with technology these diseases do not have to be a death sentence. If you use a Peg and vent if necessary indefinite survival is possible if your fortunate and have good care. Just try to live each day to the fullest, and I agree with the members above. Stay as positive as possible.

Regards,

 

[Janie H]

Doctor said that it could help with the fasciculations, I go back on 07/22, he said if they were not better or if i keep getting choked that he had another medicine he wanted to try.

 

[Janie H]

thanks carlos, time for some KFC,lol

 

[Janie H]

Thanks for the advice, I have been doing a half hour on the treadmill, 5 minutes on 5 off. My biggest problem now is some of my family. They keep telling me that the doctor is wrong and that I have lyme disease, I would love to hear thoughts on that. I wish it was lyme but I have a very good doctor, I hope he is wrong but i have accepted the diagnisis and am trying to stay healthy and live every day to the fullest, I don't want to keep wondering what is wrong ( I did that for months) my sister is insisting that I get a second opinion. I spend 2 days at a ALS clinic, thay seemed to know what they were doing, my doctor has been a ALS specialist for 35 years. I hope he is wrong.

Sorry that you are facing this issue also, hope your symptoms are no worse than mine, jumping muscles, choking mostly.

 

[Janie H]

They just got a generic, i may get it for $100 with insurance, thanks