Multiple Sclerosis

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8 medium

Anyone received lemtrada treatment? Have any advice?

I'm currently in the process of deciding on what treatment is best and I'm contemplating lemtrada.. I'm just worried about the side effects of it.. does anyone else have any stories of their treatment or how they came to make a decision? I also wondered..I know it's a little taboo but anyone used cbd oil? A couple of ppl I know have raved about it but I feel like my body has given up working and I'm scared about what to do next or what to try can anyone advise?… read more

posted about 17 hours ago
A MyMSTeam Member said:

I was given the option in October last year of either Tysabri or Lemtrada. I wasn't keen on either to begin with - monthly infusions for however long… read more

posted about 4 hours ago
2 medium

Does anyone else suffer from poor circulation in there hands or feet if so is there any meds that help

posted about 19 hours ago
A MyMSTeam Member said:

Thank you Sile very useful information I'm going to look into it

posted about 11 hours ago
5 medium

Are any of you in this high-dose biotin trial? See link below

Phase 3 Trial of MD1003 in Treating Progressive MS

https://multiplesclerosisnewstoday.com/2018/11/...

posted about 19 hours ago
A MyMSTeam Member said:

I started biotin years ago. My thyroid caused my hair to fall out. Now look at it! Woo HOo!!

posted about 2 hours ago
5 medium

Do you have trucker's butt? That's a new one 😊

https://multiplesclerosisnewstoday.com/2018/11/...

posted about 23 hours ago
A MyMSTeam Member said:

Never mind, I just looked it up. I have the opposite issue. my muscles are bulging due to spastic jerks. My gluts and thigh's are getting hard as a rock… read more

posted 17 minutes ago
6 medium

PIP claim

Has anybody that’s claimed pip got feedback on how it went. Iv filled in my form but not sure if I’ve explained things properly. Iv answered looking back on my worst days but what if they come to assess me and I’m not having a bad day. The thought of anyone coming and thinking I’m making my illness up is daunting! Don’t know if it’s even worth applying as I’m already stressing

posted 1 day ago
A MyMSTeam Member said:

I had to go for my assessment in Reading. My parents came up from the South to take me and my mum came in with me ( even though i’m usually a very… read more

posted 1 day ago
6 medium

Back stiffness

I have 2ndary progressive MS. MY back stiffens up whenever I sleep and becomes very painful so I spend at least half of each night out of bed, stretching and doing my physio to keep my back moving. Also get a pain in my back under the shoulder blade that feels like I have been stabbed - use a tennis ball to press on a pressure point to relieve it. Basically I am tired all of the time as a consequence.
I take 25mg Dantrolene twice a day to control spasms, 150mg pregabalin twice a day and 200mg… read more

posted 1 day ago
A MyMSTeam Member said:

Why not ask doctor to up your prevailing to 300mg (morning) and 300mg (night)and reduce your tramadol I’m on that dose and find it works quite well but… read more

posted about 16 hours ago
5 medium

Hi everyone, is anyone doing the Ocrevus infusions for MS? Does it cause your hair to shed?

posted 2 days ago
A MyMSTeam Member said:

Thyroid issues can cause hair loss too. Diet as well can cause that.

posted 1 day ago
2 medium

Anyone been diagnosed with Device disease.

posted 2 days ago
A MyMSTeam Member said:

@A MyMSTeam Member I sure will let you know when I find out the results going to Washington University in St. Louis Mo to see my ms specialist on 11/20.… read more

posted 1 day ago
7 medium

Let's talk standing scooters!

Hey Team.

I work in a large office (think 2 Costco/Sam's Club) so I have to do some serious walking. I'm a slow walker with spasticity and I'm looking for something easy to zip around at work.

Has anyone tried this? https://www.triadmotion.com/

posted 2 days ago
A MyMSTeam Member said:

@A MyMSTeam Member I’m glad you’re checking with HR to see if they will pick up the tab to get a scooter for you. My work put in an automatic opening… read more

posted about 1 hour ago
6 medium

Nerve pain while sleeping

I can get to sleep without a problem--Melatonin and sometimes a puff of medical Cannabis--but I wake up with nerve pain (past 9 months) like I've been shocked while I'm sleeping. It can wake me up at times. Anyone else experience this? I've been offered Gabapentin but I really don't want to take a med.

edited, originally posted 2 days ago
A MyMSTeam Member said:

I hope you find some relief soon @A MyMSTeam Member

posted 1 day ago
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