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Tag: living with MS

Pain, twitches and spasms oh my!!!

Pain, twitches and spasms oh my!!!

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https://www.mstrust.org.uk/news/views-and-comments/neuropathic-pain-invisible-illness Neuropathic pain affects up to 25% of people with MS. It is a consequence of damage to the myelin that surrounds nerves in the central nervous system. Very commonly the pain is not due to physical damage to the nerve but as a result of a physiological change within it. This means that even when the initial cause is treated or removed, the nerve remains permanently changed and the resulting painful symptoms can become a long-term problem. Once present,…

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No Ocrevus infusion today

No Ocrevus infusion today

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Shocking I know. This time there is a portion of my error involved. I told them last month my secondary insurance was Aetna, technically it is not. It is only secondary for certain things otherwise my secondary is Medicaid. What I’m not in error about is once again the infusion place waited until last minute to verify insurance. Since the information was wrong, they needed more notes from my doctors and couldn’t get approval done in time to order the…

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MS Bike Tour 2018

MS Bike Tour 2018

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Each year my step-brother bikes for Multiple Sclerosis. This is his reasons, his letter and his team. Please donate to help find a cure for MS. He bikes under Team Jamie but he bikes for us all. Why We Want to Create a World Free of MS 9! years ago, when I said I wanted to ride 30 Miles for an MS Bikeathon, my step-but-real sister Jamie said “I can barely walk 300 feet – why do they do these…

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Plenty of fish rejection

Plenty of fish rejection

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I took the plunge and rejoined plenty of fish. I had to re-enroll because every time I tried to retrieve my password, that I have forgot, it never sent me the link. So I answered all the questions, set up my profile and uploaded pictures. I got a phone call so I left the app before I had a chance to browse. When I came back it logged me out. I tried to put in the new password that I…

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New Multiple Sclerosis Culprit Identified-B-cells and T-cells in MS Medical News Today

New Multiple Sclerosis Culprit Identified-B-cells and T-cells in MS Medical News Today

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https://www.medicalnewstoday.com/articles/323006.php New multiple sclerosis culprit identified It is still unclear what causes multiple sclerosis, but new research closes in on the faulty immune system mechanisms involved in the development of this condition. New research has identified another type of immune cell that may play a role in MS. Multiple sclerosis (MS), which is an autoimmune disease, causes the immune system to mistakenly attack myelin. Myelin is the substance that coats axons, which are the projections that allow neurons to connect…

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Yesterday was a good day

Yesterday was a good day

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It’s important to talk about the good days when you have MS as it is the bad days. It started out in my pool. I swam my 25 laps. I’m happy to say that I’ve been back to swimming my 25 laps for about 2 weeks now. Took a long time for my body to bounce back from the set back I had in July with cellulitis but it finally did. Also I’ve been drinking water during my swimming and…

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Dysphagia and Multiple Sclerosis

Dysphagia and Multiple Sclerosis

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Dysphagia simply put is difficulty swallowing. It means it takes more time for food to travel from your mouth to your stomach. Why this affects people with multiple sclerosis? Muscle weakness once again. The good news is it is seen more in advance stages of the disease but it still can appear at any time. It can be mild or advanced. Hey, it’s MS. It has no set plan of attack. According to WebMD https://www.webmd.com/multiple-sclerosis/speech-swallowing Symptoms of a Swallowing Problem…

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Ocrevus infusion one week away

Ocrevus infusion one week away

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Let’s see if I can have one of my infusion without any issues. I’ve already received the call to verify my new insurance information and have heard nothing since. Last time was the mistake where they once again order the split in the medicine and I did 300mg two weeks apart when I was supposed to take the full dosage of 600mg one time. So even though I’ve been on Ocrevus now for over a year, I still have yet…

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My inherited family’s bbq

My inherited family’s bbq

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I was invited to a bbq today that I actually declined. I declined because of the elevator issue in my building https://multipleexperiences.org/2018/08/30/im-stuck/ and also because the bathroom is up an entire flight of steps. The reply to that was “we aren’t taking no for an answer. We will help you up the steps and into the building, whatever we have to do.” Who are these people? Well these are my ex-boyfriends family. I’ve developed a relationship with them that stretch…

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A quiet Saturday

A quiet Saturday

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It’s just me today. Well me Zoey and Marshmallow. The elevator in my building won’t be fixed until sometime next week so I’m a little stuck. I can’t put my scooter together or take it apart by myself. Kind of leaves me with no options for getting downstairs or back upstairs while I’m alone. You know what, I really don’t mind. I’m exhausted. I think I’ve been exhausted for the past two months. I have no complaints being home by…

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