My husband was diagnosed with Primary Progressive MS in July of 2013 at 58 years old. In hindsight, we believe his symptoms began in the mid '90's but went undiagnosed until the symptoms were impacting his quality of life enough so that we diligently began seeking answers. We would appreciate input from others diagnosed with Primary Progressive MS. Medication seems to be non-existent for Primary Progressive suffers. We would love to hear from others diagnosed with Primary Progressive MS… read more
Vitamin d3 world had an interesting post by a medical lawyer. Who swears he has been symptom free since starting.
I'm PPMS. Dx 4.4.12. I did try Avonex at the recommendation of my neuro for about 6 months after Dx...just to see if anything would happen. Nothing did and I am very glad to be off of it. Now, because we of the PPMS ilk have no well-defined options, I am left to my own devices and I have my neuro's blessing. I supplement like mad. I keep hydrated. I play brain games (Lumosity for example). I am very careful with what I eat. I exercise. I take LDN (low dose naltrexone). I will take Baclofen on occasion if I'm having a particularly bad night regarding spasticity...but fortunately that does not happen often. I am not fond of the dopiness associated with it. I keep myself busy but make sure I get my rest. I remain optimistic. I read about the disease and what is happening with clinical trials. There seems to be more attention focused on the progressive forms in the last year or so which is encouraging yes but very slow going.
I wish you luck and am more than happy to share into.
I was diagnosed with PPMS in Nov 2018 at age 59. Looking back I too believe there were signs that the disease was active. I'm still trying to figure this out. Everyone's experiences seem so different. I am taking Ampyra. I thought it was not helping and stopped taking it. That made me realize it was helping. I try to stretch and exercise but I can't do it the levels I did before and it is frustrating. Everyone says be positive. It is easier some days than others.
I was diagnosed in 99 with primary progressive MS. I'm afraid I really don't have any words of wisdom, I've had it for 16 years, and I guess thru trial and error I've tried many medicines and nothing has given me hope.I take about 23 different meds for each problem I have. I'm sorry that I don't have any answers, but I'll offer my friendship, and I'll answer any questions you may have.
I've been taking 5,000IUs a day for at least 1 1/2 years now. Maybe once a week or once every other week I'll do 10,000IUs for kicks. Good stuff.