MayMole

I am a woman, I believe in God. I try to do good. I'm a HUGE fan of BTS. I watch k-dramas 😉. Navigating life with MS.

[MayMole @Mole_May]

@PositiveWithMS It sucks! Sometimes I wonder how we find the resilience to keep going. Hope it doesn’t last all day and eases up for you soon ❤️

[MayMole @Mole_May]

I’ve been doing some research around iron levels in people living with Multiple Sclerosis. Do any of my fellow MSers have low Ferritin levels? Mine has been below normal levels since around the time of my diagnosis.
#MS #investigation

[MayMole @Mole_May]

@motorsportpete I’m still contemplating whether I should get it or not. My new DMT makes it less effective anyway 🤔

[MayMole @Mole_May]

@motorsportpete It is a helpful aid. Got one a year after my MS diagnosis. I was forgetting my meds some days and beating myself up about it

[MayMole @Mole_May]

@sxnflowerlwt Been a while since you asked but yes. It is free as long as you are qualified to access NHS care

[MayMole @Mole_May]

Just got my first delivery of the generic dimethyl fumerate. Dear NHS saving money and letting go of Tecfidera. Hope it is as close to the original as possible and gives me nothing more than a hot flush every now and then 🤞🏼#multiplesclerosis #DMT #choices

[MayMole @Mole_May]

Hi MS family. Any of you have problems with vision related to multiple sclerosis? I have once again been diagnosed with BPPV after a test that detected nystagmus. I have my doubts that the nystagmus is due to BPPV. I wonder if it is due to the lesions on my cerebellum.

[MayMole @Mole_May]

@ReneaLynnMN Hello, I have been following your journey for a while and would like your take on B cell depleting DMTs. I am to start Kesimpta soon, the sister DMT to Ocrevus. I’m worried about infection risks, did you find you got sick a lot while on Ocrevus?

[MayMole @Mole_May]

@Chalenging_MS I am going to get up now and do my exercises before work. The only benefit of a later shift is I have time to do this. Thanks for the inspiration Dana.

[MayMole @Mole_May]

@MS_Bristol is this page still active? It looks like there has been nothing new posted since 2022. I finally got to the point that I want to reach out to my local MS community. It would be great to interact with you. I have been dealing with MS since 2019 (officially)

[MayMole @Mole_May]

Hello, I have another big choice to make regarding #DMT for managing #MultipleSclerosis. I have been offered Kesimpta and it would seem to me it will compromise my immune system more than Tecfidera. I work in a hospital twice a week. Should I be afraid of the infection exposure?

[MayMole @Mole_May]

@meg_cushing Wishing you all the best

[MayMole @Mole_May]

Hi, so #clonus is now a part of my #MultipleSclerosis story. I went to a neuro PT yesterday as I’ve tripped a few times same leg. Turns out I now have increased tone and some #spasticity in my left lower leg. Still last 2 MRIs show no new lesions so 🤷‍♀️ what does this mean?

[MayMole @Mole_May]

@meg_cushing Does it still happen?

[MayMole @Mole_May]

@ReneaLynnMN has inspired me to get moving today. I usually adapt my plans as needed from walks outdoors to indoor walking when it’s too hot, stretching, chair exercises and more. Everyday with MS can change but I’ve been so low in mood that I lost the will the last few days.

[MayMole @Mole_May]

@RachelHorne19 I just joined a gym this week for some extra motivation for exercise! 😅 can’t waste my money. Mainly going for the weight training. Cardio I get from my daily walks 30 minutes average, get jelly legs if I walk for too long. My VO2 Max is poor and I want it good by end of year

[MayMole @Mole_May]

@Renea_Siegl Looks good. I’m working on setting up little rewards for after I do the tasks that I need to do rather than want to do. With MS, pushing through fatigue cos you know you need to keep as fit as possible is a huge task requiring extra motivation 😊

[MayMole @Mole_May]

@AbiBuddComms No lie, I’ve got a fan to take to work. No longer wear regular socks just thin net material ankle ones.I’ll definitely buy ‘work appropriate’ shorts cos these ‘not pretty’ legs need the breeze! 😂 I get weak + dizzy when I overheat, don’t like looking drunk/tipsy without alcohol

[MayMole @Mole_May]

@MirellaColetti My face feels really hot and itchy if I don’t eat a proper meal before hand. Preferably with a lot of protein. Otherwise I have no real problems with it

[MayMole @Mole_May]

Hi everyone, my thoughts are all over the place about this #MS No evidence of disease activity since 2021 is good but why am I worse than I was 3 yrs ago. More fatigue, more bladder and bowel issues, heat sensitivity linked to a weaker left leg that makes me limp, and more?

[MayMole @Mole_May]

@MirellaColetti Hi, I’m currently on Tecfidera. Since 2021