24 months is the average length of time generally accepted as the time it takes someone's body who underwent HSCT to fully recover. According to blood tests, I recovered fully three to six months post HSCT, but as you know if you have been following my story, there was no halting/recovery of my multiple sclerosis. There was that time right after HSCT, I thought I would stop declining and even improve physically, but as previously posted, that was only for a four-month timeframe and then I started physically declining again and I continue to decline.
After these last two years, I came to the conclusion I had far too much nerve damage going into HSCT to have ever had a lasting positive outcome from it. Like I have said in previous posts and to many people living with multiple sclerosis, it is extremely important to have HSCT early on in the course of your disease.
Incredibly, hope is alive and I have not given up. I am still working out with trainer designed workouts. I continue to modify the movements as needed. I am working full time (from home), and I go on many adventures too. Things are much harder to do is all.
Still Saying "No" to Drugs with One Exception
Ocrevus, the only multiple sclerosis drug that MAY halt progression for an undetermined amount of time, is not something I am interested in taking. All of the drugs for MS tend to have low efficacy rates and undesirable side effects. To me, the risk outweighs the potential reward.
After a long hiatus (approximately 9 months) from Ampyra, the drug whose sole purpose is help people with multiple sclerosis walk (there are zero other drugs offered that do this for MS), I decided to take the left over pills I have from the last round of taking Ampyra to see if anything happens. The best I can tell is the drug is helping minimally, if at all. Of course, when I run out, I am uncertain if I can get it/afford it.
My personal belief is that unless scientists and doctors find out how to repair myelin (protective nerve covering) all of my nerves with damage to the myelin are just like electrical cords that have been partially severed and are no longer performing well or at all. Think of an old electronic piece of equipment getting worse as it ages. The same is true of my faulty immune system, I am getting worse as I age. I do believe in the importance of maintaining a top level of health, but not sure anything I am doing will halt my disability progression/heal my damaged myelin, the cause of my physical decline.
The Latest
I am working on a heavy metal detox along with a vitamin D protocol that may help, but needs a bit of time (like months to years) to figure out if it is helping me in some way. I have been working on this since the end June. I am still trying to get all the vitamins right for me.
I am using TaoPatches again to see if their if their nanotechnology to convert your natural body heat into "microscopic beams of light" that heal your body is effective at all. They were once back in June 2020, but now not sure they are doing anything, but I am still wearing them in case something clicks.
I remain without anger about what has happened to me, but I do get scared, anxious and frustrated, which results in crying, but other than that, I manage pretty well. Ok, I can ONLY say that because of my amazing husband! He does SOOOOOOOOOOOO much for me and as a result I live a pretty normal life.
I, according to two different doctors, have permanent nerve damage in both lower legs (knee down through the feet) and it is NOT dropfoot, which I may have called it in the past. It is hard to explain what this nerve damage is like, but it makes it really hard to lift either leg and that is the disability that was mounting over last couple years and thought it was weak hip flexors. I cannot believe after all of this time I am still trying to figure out what is going on with my body.
The Future
I have spent the last two plus years documenting my experience before, during, and after HSCT/living with progressive multiple sclerosis. I plan to continue, but going in a slightly different direction. My greatest joys in life come from spending time with people I love doing what I love; learning, traveling, and eating (not necessarily in that order), so I plan to write about doing those things with progressive multiple sclerosis. Of course, if something remarkable comes along and I start to get better physically, I will definitely document that!
I may share some videos in the future to show people what life is like with a big disability. However, it is sad and can be very depressing to see, so I shy away from those things. I am not depressed and I would prefer that people reading my posts do not feel that way after reading them either.
Hair - Lots and Lots of Hair
Hair at 22 Months Post HSCT - When hair grows at the same time and rate from varying heights...
