It is tough. I go to the doctor and my neurological tests aren’t so bad from my last visit. My timed walking was increased by only 2 seconds. No big deal. My range of motion was pretty much the same range as it was last visit. My MRI shows no activity. Yet I’m worse. Everyone who is involved in my daily life knows I’m worse. It’s frustrating. It’s not like my doctor doesn’t believe me. It’s not like my doctor…
I received a call of alarm from my primary physician on Saturday night at 9pm that my thyroid number was extremely high. Showing evidence of hyperthyroidism yet none of my other tests or symptoms showed any evidence of this. Since I was due to take my Ocrevus infusion the next day, he felt I should possibly put it off. He wanted me to repeat the blood test first thing Monday morning and they were going to get me an appointment…
Since I was in the hospital, this is one of the pills that has changed. First it never made my weekly pill box, which was just a complete oversight. Second, the hospital doesn’t give that out. So I must say I haven’t correctly taken my high dose biotin for a week. It occurred to me, this morning, that this could be the reason I’m having difficulties regulating my body temperature since about Saturday. I finally started taking it again 3…
Since I was in the hospital, this is one of the pills that has changed. First it never made my weekly pill box, which was just a complete oversight. Second, the hospital doesn’t give that out. So I must say I haven’t correctly taken my high dose biotin for a week. It occurred to me, this morning, that this could be the reason I’m having difficulties regulating my body temperature since about Saturday. I finally started taking it again 3…
As promised it was the first question I asked my neurologist. She explains that the study had 93 people in it. According to the study, over the course of a year, of the 93 people enrolled something like 20 of them had relapses that I never had a relapses before. That’s why they deemed that the high does biotin was not effective. This is the information on the application for the withdrawal. http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/004153/wapp/Initial_authorisation/human_wapp_000247.jsp&mid=WC0b01ac058001d128. Well my doctor explained that she, as…
I was informed by my friend that my pharmacy now makes a combination pill. It’s the same three pills a day, but it now has in addition to the hundred milligrams of biotin, 400 mg of the Alpha lipoic acid. You can click on the pill bottle on my webpage or you or you can click on the link I provided below. https://highdosebiotin.net/ Alpha lipoic acid has been studied to help in secondary progressive MS. https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/lipoic-acid Studies in animal models…
I found this article that in December of 2017, the application for high dose biotin has been withdrawn from the European market. https://www.mstrust.org.uk/news/news-about-ms/high-dose-biotin-withdrawn-european-licensing The European Medicines Agency (EMA) has been examining data on high dose biotin (MD1003, Qizenday) since the application was accepted in September 2016. At a meeting last week, the EMA’s Committee for Medicinal Products for Human Use (CHMP) concluded that the clinical data from two trials that enrolled 253 patients was not sufficient (link is external) to…
Over 20 years I have been on many different drugs. I’ve stop taking things and started taking things. There are many drugs I’ve taken for the MS itself and many for its symptoms. I figured I list all the things I take right now from my MS. I’ve also included links to clinical trials and a couple of drugs I recently stopped taking. Ocrevus this is my main drug for relapsing remitting MS. I take it through an IV once…
I kicked ass this morning. New workout and I stood on my feet for a record of 18 minutes. Omg!!! That’s incredible. Granted my feet can’t move too much, but that’s ok, that was an tremendous amount of time. In physical therapy, one of the main things they do for people with multiple sclerosis, or people that can’t really stand on their own anymore, is put them in a device that either stand them up or strap them in bars…
I haven’t taken a high dose biotin in about a 2 1/2 weeks. I have to admit there is a change. The only thing with MS, you just don’t know what the actual culprit is. I’ve been very weak in both my hip area and my thigh area. That’s causing a greater difficulty than normal getting up if I’m down on the floor. I’ve also had major fatigue again. Where I was sitting down and my eyes start closing whether…
