Neurology

[bon535]

Hi, My son has primary progressive MS and has tried everything out there for MS but without any success.  he is bedridden and is so tired, he has a baclofen pump in and because of chronic uti, can't take tysabri anymore.  He has a suprapubic catheter and this last time his infection went septic.  Is there any other thing that is out there for him to try to get some energy - my neurologist is percribing ritalin, is that good?  Do you know of anything else and if you have any trials going on pleaes consider him.  Thank you.

[RedFlame]

Hi Bon and welcome to our support community.  I'm sorry to hear about your son and the fact that he has progressed to this state.  

I took Ritalin for 3 years and did very well.  It made a huge difference in my life.  The quality of my life improved greatly.

I think it could make a huge difference for him.  He might be able to work up to sitting in a chair or even sitting in the car so you could take him for a drive.  I don't know if that is feasable with his pump et al but worth a try.

How is he responding to it now?

take care,    Red

[Lulu54]

Hi bon and welcome.  It must be horribly frustrating trying to find help for your son and I'm glad you are looking for new approaches.  

Ritalin is commonly rxd for energy levels if other more traditional drugs are not effective for him.   There needs to be more conversation with the neuro about options, it sounds like.

I hear they are doing trials with Gilenya (the new oral med) with PPMS .... you might search for that information and ask your neurologist for the referral.  Since you didn't list your geographical area I can't be of more help in finding a cneter to refer you to.

-Lulu

[HVAC]

Hello we are not Doctors we are just people with MS or people going through diagnosis who give emotional support. Few of our members have PPMS. Of those fewer to that degree. Unfortunately fewer trials are done on people with PPMS.

Fewer of the MS population has PPMS so fewer trials. It is harder to track improvement in trials with people with PPMS. People with PPMS have more medical problems than people with RRMS so it is harder to get a population for a trial.

Has his Doctor thought of Ampyra? The insurance may not even cover it. It is usually used for walking but it gives some people energy as well. It is a narcolepsy drug. It can also be prescribed through a compounding pharmacy for less but most Doctors do not want the liability of a compound in case it was formulated wrong. MS Specialist used to prescribe it as a compound before it came out as a brand name.

Ritalin or Provigil are used for energy. The problem is the drugs he is on and his medical conditions. They have to be considered by the Doctor before prescribing anything. The Baclofen is a muscle relaxer so that might make him tired.

I could not stand the way Ritalin made me feel but everyone is different.

How old is he? How long has he had MS? PPMS is hard because their are fewer options for fighting the Progression. It usually attacks the spinal cord more than the brain. When the brain is attacked their is more room to find pathways around the damage. The spinal cord means cut signals.

I have PPMS but I am very lucky the progression is very slow. I have done research on it but do not speak from his experience.

Good luck.

Alex