I wanted to report some FANTASTIC NEWS. For the FIRST time in 7 years since the official diagnosis, my Annual MRI with and without Contrast showed NO NEW LESIONS !. I am on month #4 of Tecfidera.
My Neuro exam showed 2 more changes, and these are changes in the last 3 months since the last time I saw my MS specialist. Both pupils are now the same size and reacting (one was normal the other totally different size for 7 years+). The other change was I had my right eyelid has been sagging for several years. Also GONE. Both issues with the eyes were there up until March when I saw my Neuro Specialist last, started Tecfidera in April and they are both totally resolved!
I did have a large drop in my lymphocytes, how ever, I am still well within the normal range and we are attributing it to a UTI/Kidney infection and are retesting every 4 weeks to keep track. My Neuro says I am well within the normal range and he won't get concerned until I get to around 500. I am at 900 as of the last test. My next retest is in 2 weeks.
What does all this mean....well, I still have MS, and still have the lesions I had. We will be excited to see next years MRI, he feels we can wait 1 yr because I have a stable MRI. If things change, we will revisit that. In 4 months of being on Tecfidera I have seen some changes in cognition and emotions and being able to filter many things going on at the same time better, but I pretty much am sharp from 6 am in the morning until about 2pm but then I am totally exhausted physically and cognitively and emotionally by about 3pm. For me this is a HUGE improvement, but the physical reconditioning will have some limits, and it is a wait and see. If I do something physically or mentally exhausting, I run out of gas sooner, but I am going to be patient and work on limiting myself and better planning. I am just SOOO EXCITED.
I have not had ANY side effects since the beginning and following the meal and timing of my other meds. I am now able to eat fruits and vegetables without having issues. For someone with severe GERD and Gastric Paresis these are BIG positive changes as well. I have gained weight, about 5 - 7 lbs and am starting an exercise program in the water/pool this week. I have decrepit muscles and don't want to hurt myself, and since I have been feeling better I have gotten myself into trouble by doing too much physically with pain being the results in my back, arms and legs, so a reconditioning program slowly and better planning so I don't set myself back several days or weeks is in order. I live in the deep South so the heat and humidity for anyone with MS can cause problems too, and am working on being better hydrated and keeping my body temperature in check as well.
I have another post on this side called: Not everything is.... The other issues that may have resulted because of MS or not cannot be expected to be effected either way by the new medications, but no one knows, so when something Neurologically changed so dramatically I am very excited for ALL OF US who have MS that there are a lot of things in our lives that can improve.
What a FABULOUS positive change of events. I had already described to everyone that I have been able to not use the cane, my balance is much better now too. I am soooo hopeful and this is the first DMD drug that has made any positive changes, let alone my first stable MRI EVER. Sure, the old lesions are there, but literally I have not had an MRI where there hasn't been at least 1 - 2 more, let alone the Neuro exam with the eyes proving that there has been some wonderful positive changes.
Blessings,
. I hope all of our fellow MS people and their care givers can be inspired and hang in there. Do not give up untill all avenues have been tried and exhausted. We are all on the same roller coaster together. God bless.
