If you are indeed Primary Progressive then there are no existing disease modifying drugs that are specifically designed to help. I was put on Avonex too initially and stopped after 7-8 months because I didn't feel like it was doing anything beneficial for me and I hated the whole routine associated with it. Our best options, I think, are to change what and how we eat, exercise as much as we can without hurting ourselves, take LDN, take a whole bunch of supplements that are going to target the disease at the mitochondrial level. No - I'm no doctor. But I'm nobody's guinea pig either. If all the medical community can do is take wild stabs at the beast by throwing various, unproven drugs at then I'm sorry - I feel I can do that better as I am constantly listening to and aware of the results.

Actually I just posted something recently that addresses PPMS, LDN (Low Dose Naltrexone), and the supplements I take that I think are beneficial. Reposted below for your reading pleasure:

"I'm PPMS and I take LDN. I started at 3.0mg about 10 months ago and moved up in dosage to 4.5mg about 4 months ago. Positive results? Well the left leg spasticity that I usually experience at bedtime has been greatly reduced. That is definitely positive. I get better, more restful sleep as well.

Also take a bunch of supplements:

SAMe (S-adenosyl-L-methionine)
Methyl Folate
Shilajit Fulvic Acid Complex
PQQ (Pyrroloquinoline quinone)
Acetyl L-Carnitine / Arginate + Alpha Lipoic Acid
Citicoline (CDP Choline)
Neuro Optimizer (which is line a multi-vitamin for the brain)
Resveratrol (for the anti-inflammatory properties...anything anti-aging is BS)
Spirulina
Vitamin D (10,000 iu daily)
Vitamin B Complex
Coenzyme Q-10 (CoQ10)
Ubiquinol (the more bio-available form of CoQ10)
Magnesium/Zinc/Calcium Tablet
Fish Oil (omega 3 fatty acid, EPA and DHA)
Multi-Vitamin

I know it's a lot of stuff. But since we are PPMS we don't really have many options. The majority of the medicines are designed for the RRMS crowd of people and even those are only 33-34% effective (percentage comes from NMSS and WebMD). And those medicines are expensive. The supplements end up being more cost effective in the long run. So along those supplements I have also made changes to my diet. Less meat....a lot less meat. Twice as many fruit and vegetables as before. I juice fresh home grown vegetables (Kale, Celery, Carrots, Ginger, Cucumber). Lots of water. Exercise...a little bit or a lot every day if possible.

Good luck & happy holidays!

sjm"

Hi Phillip! I had a really hard time adjusting to Avonex, and my MS didn't calm down until after the second year on the medication. Which shots are you on? I haven't heard anyone use the term "advanced". Difficult to advise as I'm not sure what that means. I'd be asking about other options for meds or adding on treatment if you continue to get worse.

I tried Lions Mane May go back on it for now on B12 D3 Omega3 with fish oil and CoQ10 and MS med Tysabri infusion hoping to change first of year

Hi Abby2 and BAnniceCraig -

Yes I believe the supplements are helping. I am planning to get an MRI in early 2016 just to see what, if anything, the supplements have been doing for me: has there been rapid and crazy amounts of progression or are things more or less the same as they were back at my last MRI...early 2013.

There are some different things on my list now that are not part of the above...it keeps changing. The most recent addition is LIon's Mane Mushroom (Hericium Erinaceus) which has been shown to aid in myelin regeneration. I'm taking 1,800mg a day up until that next MRI that I mentioned. Will keep you posted.

I'm on Copaxone now. I was on rebif.

From what I understand it is primary progressive stages of ms. The Dr found it when they did an MRI of my neck. The next day I had one of my head and they took me straight to an office and signed me up for disability and told me to stop working. I just feel I am worse now on the shots. I am hoping it gets better.