rachaellouise 23/02/18
Last reply 4 months ago
How are we all?

Hi their

Just checking in . How is everyone doing ? Any advances in ms treatments , ideas or breakthroughs ?

Anyone taking anything natural or doing anything that you feel is working for you that We could add to out regimes ? Lol

Rach x

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stumbler
4 months ago

@rachaellouise , I wish. πŸ˜‰

But, I am trying to get myself some Low Dose Naltrexone (LDN), to see if it can help at all.


rachaellouise
4 months ago

@stumbler πŸ’ͺπŸ’‹. Hello have you been going to your special place ? Still haven’t chosen one myself !

You wish ! It will happen …

Rachael.


stumbler
4 months ago

@rachaellouise , special place? Brain Fog again, possibly…… πŸ˜•


rachaellouise
4 months ago

@stumbler

Yeh that quiet spot where you go fishing ! Sounds wonderful ! I know what you mean about brain fog I’m always forgetting things . .

Thy LDN – what is it and what will it do ?

Also breakthrough – we will get one .. maybe we already have !


stumbler
4 months ago

@rachaellouise , Ah, my fishing place! I don’t go there in Winter, I’d freeze my bits off! In any event, I’ve been housebound since my stay at the Hotel NHS before Xmas, but I’m optimistic that I’ll feel up to getting out very soon.

Ah, LDN! Have a read, https://www.mstrust.org.uk/a-z/low-dose-naltrexone-ldn . It’s basically cheap as chips, hence there’s not much clinical data available – there’s no money in it! At Β£30 a month, and me being SPMS, it’s worth a punt.


affibelle
4 months ago

Hi @rachaellouise
I am SPMS with a diagnosis in 1991. You asked what’s working well for us? I’ve always followed the swank diet but then recently (6years) began following Overcoming MS diet. I meditate daily, do yoga and have Reflexology weekly. Since August 2017 I began following the Wim Hoff Method ( bit alternative but I LOVE it) Ms aside I feel amazing and am really happy…hope you are well.


whittytara
4 months ago

I’m nearly back to normal after a relapse in 2016 and a long recovery. I’m even running the London Marathon in a couple of months for the MS Society so I’m feeling pretty chuffed! How’re you doing @rachaellouise?


highheeledfagin
4 months ago

Hey, there. I’m crashing a bit this week – broken sleep fatigue, headaches, weight loss -and I’m just starting the run-up to Lemtrada R2 in Spring. I meditate quite inconsistently and try to do my stretches every night. I try to eat more fish and supplement but no major dietry rules.


rachaellouise
4 months ago

Hi all thanks for your comment…

I am doing okay . Ms rollercoaster, you know what I mean! but im okay, trying my best to stay positive!
Bobbing along trying to do what I can and try what I can to see if things improve.
I am following a dietary protocol also lifestyle elements to it so will take a while to get through it all. Just got to keep trying and going! Faith and Hope!

@stumbler – I will find a special spot, part of the lifestyle element!


rachaellouise
4 months ago

@stumbler – The LDN looks good. How long have you been on it?


stumbler
4 months ago

@rachaellouise , I haven’t got any yet. Maybe, next week sometime.


mmhhpp
4 months ago

Please let us know @stumbler if ldn works….. i am spms and i am keen to know….xxx


rachaellouise
4 months ago

@ stumbler – let us all know ! πŸ’‹πŸ™

Hope well
All have a good week πŸ˜ŠπŸ™


potter
4 months ago

I found out about LDN when I was first diagnosed. A doctor started using it to treat his daughter, she was SPMS and no other treatment was available. He used it to treat symptoms and thought it helped her. There has been recent trials that indicate that LDN might help slow down MS, I haven’t read them yet, but it is something I plan to look into when I discontinue taking Tecfidera. My neuro thinks I should stop taking it because of my age and I have been on it for five years. Let us know how you do on it, have you tried your regular GP for a prescription? Potter


stumbler
4 months ago

@potter , I’d have a problem getting to the GP at the moment, so I opted for the Private Prescription option.

This would give me the first three months. If I had a definite benefit and wanted to continue, I may try for an NHS prescription at that stage. πŸ˜‰


potter
4 months ago

Stumbler I know this is off topic but I tried to send a reply to Rambler and my message was sent back as a failed delivery. It said that Shift.Shift ms was no longer a functioning address. I also can’t bring up my list of friends or do anything else on the Shift site. Are they having problems? Potter


stumbler
4 months ago

@potter, email sent. πŸ˜‰


rachaellouise
4 months ago

Hope we are well and it’s snowing ! 😊
Lots of snow my fellow warriors x


kitty369
4 months ago

Lovely thread, I am 2 weeks post R1 Lemtrada, I have no idea how effective it is yet, just glad to be off infusions and home!

Also enjoying the beast from the east totally snowed in, in the Peaks in north Derbyshire, all day fires and defrosted hen water is all I have time to think about πŸ˜‚

Very interested in the LDN and as u say @tumbler it’s worth a try anything is with this MS journey. Please share any thoughts on it 😘


chezy17
4 months ago

Snow day!!!!! Gotta love the snow, sledging, snow angels, snowballs and even played on the park 😊.
Enjoy the little things in life right 😊, my daughter has never seen snow this deep and her face and smiles say it all 😊.
Another snow day tomorrow, so snowman building me thinks 😊.
I know what you mean kitty, gotta love the snow in Derbyshire 😊.

Enjoy it guys and girls 😊!


rachaellouise
4 months ago

Hi Chezy17 – how are you chuck – always a big smile πŸ˜ƒ
The winds are strong here . I can here them … the bird tables gone over ..
I’ve had a little walk out with my pooch and was frozen to death and blown away in the winds …

It’s the little things correct ! Have fun tomorrow won’t you with your girls- your a bright light πŸ˜‡πŸ˜‡

@Kitty360 – hi there kitty nice to meet you . Have you got lots of hens ? Frozen ponds and all.
Beast from the east love that .
Hope your feeling better soon xx


rachaellouise
4 months ago

chezy17
4 months ago

Hey @ rachaellouise
For when I don’t have a smile, there’s always 🍷 right 😜!
Haha, I’m backwards, heat doesn’t bother me but the cold is bothering my MS but it’s not stopped me having fun with the kids 😊.
Glad you managed to get out for a walk chick, even in minus temperatures, it makes you feel alot better 😊.
It is windy, kept me awake last two nights but it’s actually stopped snowing today πŸ˜‚.
Going to attempt to build aβ›„ today with my son and daughter although the snow seems very fluffy 😊.

Take care 😊


cameron
4 months ago

If you’d seen me yesterday you’d have thought I was headed for the Arctic – snow boots with spikes, furry hat and mittens striding out with my walking poles…… just to walk from the car park into Tesco’s!


rachaellouise
4 months ago

@cameron – oh the joys of this beast lol πŸ˜†
I trust your safe now and snuggled up with a nice warm drink ! You deserve it for that effort !🀩

I will be venturing out shortly myself for a walk brrr with my dog 🐢

@chezy17

Yeah it kept me awake too . The joys.. hope you managed to build your snowman

πŸ’•πŸ’‹


chezy17
4 months ago

Nah I didn’t chick, it was rubbish snow, too powdery but we had fun 😊.

I did however, just flood my kitchen, forgot I was doing the pots and lay down on my sofa πŸ™ˆπŸ˜‚!

Who does that, oh yeah me πŸ™‹!

πŸ˜‚πŸ˜‚πŸ˜‚

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