This is my step brother’s 11 year biking for MS. He bikes in my name and for so many others that suffer from the disease. I received his email this morning and as always he fills my heart with love because of his fundraising efforts and the fact he does this in my name every year. 11 years of hard work – and 7 years of top fundraising efforts. And all thanks to you. Every year, donors like you have…
My next infusion is supposed to be in a few weeks for the full dosage of Rituxan. I called the infusion place that does the schedule for my medicine yesterday hoping to get a jump on things and avoid any issues. This time, for the first time, there shouldn’t be any problems. I haven’t had any insurance changes, Rituxan has already been approved from the last time and I’ve been getting my infusion with this place for a few years…
I had a visual appointment with my MS specialist yesterday. She is the one who prescribes and advises on my main MS drug therapy. Currently I am on Rituxan. The question of my disability getting worse really isn’t a question, it is a fact. We’ve discussed other drugs but unfortunately the one she was waiting for is still a few years off. That’s the Ibudilast. She did yesterday for the first time mention Mavenclad. In all honesty I didn’t know…
I have to say this was a really nice office. The whole staff was super nice but the doctor was extremely nice. He spent a lot of time with me discussing the issues with constipation and multiple sclerosis. What a nice man he was. After a lengthy conversation together, the diagnosis was chronic constipation. Nothing shocking there, I knew that as did my referring neurologist. It was what should we do about it that needed an answer. He asked me…
Provigil or it’s generic Modafinil reduces extreme sleepiness due to narcolepsy and other sleep disorders, such as periods of stopped breathing during sleep (obstructive sleep apnea). It is also used to help you stay awake during work hours if you have a work schedule that keeps you from having a normal sleeproutine (shift work sleep disorder) https://www.webmd.com/drugs/2/drug-16964/provigil-oral/details I’ve taken this drug for over 10 of my 21 years having MS. We decided to add it back in again recently because I’ve been suffering from fatigue Neurologist appointment complete….
I didn’t cry. I didn’t leave happy but I didn’t cry. I don’t leave with good news anymore so it is hard to be upbeat. I had three things on my list to discuss: Bathroom issue Fatigue Weight All discussed in my blog yesterday Neurologist check in tomorrow. This was the outcome. Bathroom. I was correct and I’m sorry to say this is a common problem amongst people with multiple sclerosis, due to lack of muscle control to lead to…
I have one of my neurologist appointments tomorrow. I have two neurologists. One is the specialist in NYC at one of the big hospitals. She prescribes my main MS drug, currently Rituxan, plus recommends anything in clinical trials like biotin or statins. She’s a great neurologist but I don’t consider her my main neurologist. That is the one I have the appointment with tomorrow. This is the neurologist that diagnosed me 21+ years ago and has been my doctor the…
My headache has finally broke. I had it for three days this time. I thank modern medicine for keeping it quiet and letting me function. This time without a doubt it was caused by my spasticity. I felt the all too familiar feeling hit me on Saturday. I woke up and my entire back was in a tight knot. The one I describe like a spaghetti fork. It feels like someone took all my tendons and twisted them onto a…
This is in regards to a number of my blog posts like A honest look at an MS bad day orBackdoor chute suggestion worked. I talk about the embarrassing symptoms that I have that it hopefully helps someone else to feel less embarrassed. It is another part of my disease as out of my control as my gait and my numbness. It isn’t something that I can control anymore than I could control another MS symptom. I get why we…
I went into the gym in my building this week. It isn’t a large gym but they have more than enough to get a good workout. I have been trying to do some weight lifting exercises in my condo over the weekend. The problem is I’m exhausting myself and my arms and I’m alone. It is causing problems for me when I’m trying to get around. Not the safest thing for someone with MS to be doing. I decided to…
