Last reply 1 month ago
Dinnerlady

Hi
First time for me diagnosed 11 years ago never offered any medication told i did.nt fit criteria anyway 18 months ago after having a rapid decline with my mobility was told over the phone by my M.s. nurse i was now s.p.m..s so no treatment available for this as we know.Started l.d.n. 6 months ago no difference so far also this week trying c.b.d oil for the pain which seems to be everywhere at the moment. Ok had my moan how is everyone else doing?

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stumbler
4 months ago

Hi @dinnerlady , so you were happy with the new diagnosis 18 months ago?

I started LDN a couple of weeks ago, so still a bit of a virgin. I’ve been ramping up the dosage weekly. I’m still unsure whether it’s providing any benefit. What I have noticed is that I’m feeling knackered, since I hit the 4mg/ml dosage! So, I’m going to drop back down a bit on the dosage.

As far as CBD is concerned, you need to “pick” your supplier. There’s a lot of very weak CBD available, which might have a negative impact on your purse, whilst providing little benefit.


dinnerlady
4 months ago

Hi stumbler have tried a few doses of the l.d.n. have found 3 seems to be the magic number for me. Hope u start to see some benefit lots of people have so I.m still crossing my fingers and toes!!! Because nobody else is offering any help


stumbler
4 months ago

@dinnerlady , I was aware that the “usual” dose is about 3mg/ml. I just wondered how you would know what the correct dosage is. I think I know the answer to that question now………………


wjgregg
4 months ago

What is LDN?


stumbler
4 months ago

mmhhpp
4 months ago

@dinerlady

The new growing idea is to carry on treating spms. Specially if inflammation is present

I did not have enhancing lessons in my MRI but a bmnew spot appeared which indicates disease still active. First neurologist said sorry spms of medication no alternative , immune system attacks come back in ear and eyes still no acction .

2nd neurologist is going to prescribe cladribine thanks god!

If your neurologist doesn’t get it change it! Like Boster says they are good and bad just like plumbers

Do you have mri? Active disease despite spms? Do not give up!


mmhhpp
4 months ago

wjgregg
4 months ago

Thank you @stumbler, I am now in the picture.


mattembry
4 months ago

mmhhpp
4 months ago

@mattembry
Thanks!!! This video is an eye opening. Prof Ebbers is very known in Oxford and credible in my eyes.


mmhhpp
4 months ago

@mattebry

A bubble to be burst….. but who can break it..


freddygiguere
4 months ago

Hey I’ve been on CBD concentrated cannibus oil for 8 month at 55% CBD and I have seen amazing changes and my MS specialist has seen my approvement and since has taking me off my Avonex needles. So I recommend keep trying it.


suzie23
4 months ago

Hi @dinnerlady

I too are new to this site , i was diagnosed 2010 with ms although the neurologist tells me its now primary progressive now ! I too was never offered any drugs only to help with with spasms!
8 years now decided dont really have many but can control thru stretching & some foods make me spasm so avoid it . Had appointment this week to be told no drugs for Primary Progressive I couldn’t believe this why??
I have had Fampyra in the past but its a private prescription cost £191 10 GBP a month! After 3 years decided to stop as not working as good! Hardly walking at all now crutches & sticks if not in wheelchair!
So anti drugs right now tried nutrition diet , supplements & now trying chinese herbs ! Any suggestions?


nutshell88
4 months ago

Hi @mmhhpp I couldnt wait till it bursts
Yes im concdeted extremly underweight.
And i hardly finish my meals and have MS for so long
But with such a skinny body i felt something like interferon needle was over toxidy conceding my weight and my age brain sense soul all told me if you took thrm you are harming yourself and brain unreversably way. They are too mysterious for my mind to accept any of them and yh im like u waiting for the real fact.

@dinnerlady hey there
I hope you are feeling better now. How is your balance now its what scares me the most 😰 about MS

I hope you fully recover of this invader disease hehe

Be safe all of you


dinnerlady
1 month ago

Hi sewing chick was offered cclemastine by my pharmacist a few months ago but after speaking to a G.P. was told because my bathroom is downstairs and the cclemastine has to be taken in the evening it would be a problem to get downstairs because of the drowsiness is this a big problem for u?? But after hearing your great results I am very tempted

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