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Tag: ms treatments

I’m scared of this MS symptom

I’m scared of this MS symptom

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I’ve written about this before but it happened again yesterday and it really scared me. https://multipleexperiences.org/2017/01/23/multiple-sclerosis-serious-symptoms-respitory-issues/ I woke up not feeling well. I had this heavy feeling in my chest. Not like the MS hug symptom which is the tightening feeling through your chest like congestion, simple congestion in my chest. I just couldn’t produce a cough that would move the mucus up and out. I spent the whole day trying to cough, using my Doterra oils and drinking tea…

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Starting the process for my next infusion-changing from Ocrevus to Rituxan

Starting the process for my next infusion-changing from Ocrevus to Rituxan

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I am due in March for my full dose infusion of Ocrevus. A process that has never run smoothly and has caused a lot of aggravation. https://multipleexperiences.org/2018/09/13/no-ocrevus-infusion-today/ https://multipleexperiences.org/2018/09/21/no-ocrevus-infusion-yet/ Those blogs were only my issues with the last time I had the infusion. I had issues every time my infusion was scheduled. Now I’m going back to Rituxan at the full dosage. Rituxan which is technically not approved for MS but I’d prefer to be on for safety reasons. I’ve explained…

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Ocrevus, Rituxan not new drugs

Ocrevus, Rituxan not new drugs

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I received an email yesterday about a new drug for progressive MS called Ocrevus. https://www.cbsnews.com/video/new-drug-provides-hope-for-those-suffering-with-ms/I don’t get it, I’ve been on Ocrevus for almost 2 years already. Is it really still new news? I wish I could rave about this drug that it has done wonders for me, but it hasn’t. I haven’t had any relapses and for that I am thankful but it certainly hasn’t halted my progression. I am worse today than I was two years ago. That…

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A reminder how long I’ve had multiple sclerosis

A reminder how long I’ve had multiple sclerosis

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It’s was my routine checkup with my neurologist today. One month shy of my 21st anniversary of my multiple sclerosis diagnosis. This appointment was with the neurologist that made that diagnosis 21 years ago. He knows me well. My folder is very thick and over the years it has been thinned out and moved into storage. Every time I see my file it is a reminder how long my history with this disease has been. 21 years. I ignored it…

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This week at physical therapy-strengthening the core

This week at physical therapy-strengthening the core

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I asked in therapy about the issue I had in mahjong last week https://multipleexperiences.org/2019/01/04/couldnt-hold-myself-up/ with holding up myself up. We discussed the issue with my weakened core muscle. I’ve had multiple sclerosis for almost 21 years and it was my core region that was on of the first things effected by MS that never got better. It an area that has always given me issues and has always been an area we work on in therapy. A while ago I…

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Back Spasms

Back Spasms

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One of the most common of MS symptoms are spasms. They can range from mild to severely painful. I know many people with both extremes. I am considered mild. I have them in my legs mostly but also in my back. It’s my back spasms that can have the highest degree of range. On a good day I may have a few spasms in the whole day. A bad day I’ll have a few spasms every hour. Even the spasms…

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Back to Forks over Knives, plant based eating

Back to Forks over Knives, plant based eating

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I tried Keto for a few months and it did work for me at first. I did take off weight but eating like that wasn’t something I could do on a long term basis. As I got sick of the food, I started eating bad. I just don’t like cheese and butter all that much after not eating it for over a year. At first it was good like a new treat but that wore off quickly. I did like…

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MS Focus on Research for November

MS Focus on Research for November

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This month they had a few interesting articles on new MS research I thought I’d enclose. https://msfocus.org/About-Us/MSF-News-Articles/167 A new study shows an overlooked source may be able to replace lost nerve insulation and provide a new way to treat multiple sclerosis. The discovery of mature myelin-producing cells’ capacity for repair opens new opportunities to slow or reverse the disease. That may call for new therapeutic approaches that rally the oligodendrocytes to reach out with new lifelines to damaged myelin sheaths….

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Rituxan instead of Ocrevus

Rituxan instead of Ocrevus

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Going to see my neurologist, on my mind was questions of whether to stay on Ocrevus. I felt if I was still declining so much why be on a drug that can come with some serious side effects. Was the pros still out weighing the cons. I had two other drugs in mind Siponimod and Ibudilast. Both drugs are coming out for secondary progressive. My neuro shot down Siponimod because I was on Gilyenia and it is very similar to…

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My neurological tests don’t show my ms progression, why?

My neurological tests don’t show my ms progression, why?

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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…

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