A week in the life of Multiple Sclerosis

A week in the life of Multiple Sclerosis

A week in my MS world. I already had my rant of distress this week. So far the week has been better but it’s Thursday and I still have a lot going on.  If you have MS maybe you’ve heard of the studies of biotin in high dosages that seem to help people with more progressive stages of the disease.  This study which was done in the US is still small but larger ones have been done in other countries. I did speak to my MS specialist who said that she thought it was a great thing for me to try.  The dosage I’m taking is a 100mg three times a day. I had to fill this from a specialty pharmacy because you can’t buy this high dosage from just anywhere. Today will be my second full day. Will it make any difference? It’s technically a vitamin what do I have to loose. Hey at best, it helps, at worst, my hair and nails grow. The specialty pharmacy that has the biotin is highdosebiotin.net.

https://multiplesclerosisnewstoday.com/2016/05/31/medday-attends-european-academy-of-neurology-2016-and-presents-extension-phase-results-of-the-ms-spi-trial/

Today I’m getting AFO or braces for my legs. This will be fun.  They are supposed to help me walk. The funny part to that is I need physical therapy to train me to walk in them. Ive compensated my difficulty walking for so many years, now I have started creating habits that the braces will force to correct. However because I’ve been walking this way for so long with the braces on I won’t be able to do what I’m use to, this afternoon’s fitting will probably not help me walk but hamper my walking. He’s warned me. So this assistance device, something else I’ve fought for a long time, will hopefully not be thrown in my closet tomorrow never to see daylight again. I admit I’ve made no physical therapy appointments yet.

Like all of that isn’t enough I finish my week with a 6 hour infusion in NYC of rituxan. It starts with blood work to make sure everything is ok.  This is just unnecessary waiting around. Then as always steroids my favorite IV drug. I believe it’s a 1000mg but at least it’s only one day. I get a tablet of benedryl at this point hoping that this is enough and I have no other allergic reactions when the medicine actually starts. Last time I got severe itchy ears that I finally went crazy enough that I had to tell them. They had to stop the infusion and give me benedryl through the IV. OMG that was the craziest feeling ever. It was like getting a shot of morphine which I had once after I cracked my head opened resulting in 8 staples. No warning just a wooooooossssshhhh. Good thing I wasn’t planning on standing anytime soon.  It doesn’t last more than 10 minutes, sorry to any drug addicts looking for a high, but that was an intense 10 minutes.  Hopefully this time all goes through and the start to finish is no more than 6 hours.

Well hopefully this all has good outcomes definitely a lot going on. This was definitely a week I have to chalk to MS. Next week will be back to our regular programming schedule.

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