mermaidia11 20/11/17
Last reply 7 months ago
The knot in my rope of hope

Firstly, would just like to say thanks to everyone on here for the helpful and sometimes silent support you have given me over the last year.
Which has been terrible, frankly. I am sorry I have been so mercurial In my comms here.
I have secondary progressive MS, but after a few bad falls earlier this year, was told I also had cerebellum ataxia. My lesions had decided to chomp into my cerebellum The neurologists advice was to carry on what I was doing and to steer clear of the ‘dirty drugs’. But the reason I went to see her was because I couldn’t carry on with ‘what I was doing’ I couldn’t really do much and when I did do anything, I fell or exhausted myself. My quality of life this year has been 0.
I am only 43, with two children – who have had to spend a lot more time with their father and his new gym bunny wife. (Obviously, I was traded in when my MS got worse- but that’s another story – u certainly find out who your true ‘friends’ are)

So I have struggled on, feeling like death tbh – even a tough ole scouse bird can’t thrive in the circumstance I found myself in. Up until a few weeks ago, I was housebound, (adult social care round here is non existent- they don’t want and don’t have the funds or morality in my experience) felt sick all the time, couldn’t walk one step unaided and was in immense pain Daily. As well as bladder issues, breathing issues, eye issues, regular choking and speech changes…seizures that would knock me off my feet with uncontrollable shaking etc…I was ready to throw in the towel – because nothing I did made it any better and the daily grind of existing really had worn me out.
I happened upon some information about fibromyalgia and it sounded as horrific as the things I was experiencing. I watched a programme about motor neurone – she wasn’t in as bad a state as me… so in desperation I decided to try LDN.

I’m 4 days into taking it. I have walked upright for the first time this year. I have got my appetite back, my speech has improved, my cognitive function has returned, my son commented ‘I think that medicine is working y’know- you havnt shouted at the telly all week..’ out of the mouths of babes…
I’m not as mortally depressed, I have actually experienced sublime joy at being able to get the wheelie bins out!
The changes so far are small, but significant so far.
LDN is not toxic because only a tiny dose is needed-and the mechanism of how it works seems to me to be both logical and obvious, no I have researched it. It is also cheap, so medical advocates have no financial gain. Which is refreshing.
I would advocate that anyone struggling should investigate it further. It has been the knot in my rope and after 4 days, i am compelled to share to all of you wonderful brave people – who have been such a support to me .
Watch the whole of this if you are interested in finding out more

The LDN Story (A documentary about low dose naltrexone) – YouTube

Love n light to all ✨🌈💐💝☮️✨

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red-suzuki
7 months ago

Your knot was very frayed, but you seam to have found an end to stop it all unraveling…bless you…..long may it continue mermaid


mermaidia11
7 months ago

It was frazzled mate!
Thanks so much red-Suzuki hope your knot is intact mate x


potter
7 months ago

I am glad you found it, I have mentioned it several times on the forum but I have never taken it. When I was first diagnosed I found it in my research. My husband had a friend was wasn’t doing very well with his MS, he tried it after I suggested it and was able to walk with a cane again. He was so grateful. LND is my backup medicine if or when I get worse. Potter


bok2bjan
7 months ago

I’m going to investigate it again!


teresapascolat
7 months ago

Dear mermaidia11, I’m so and so very glad that you have found a way out of that horrible situation. I have been taking 3_mg. LDN daily myself for a couple of weeks, but I have been also under the whether, so to speak, lately…so I can’t really say. Still early for me to judge, also because my symptoms are not as clearly showing…It is very good to know you feel better😊 and thank you for letting us know about your experience.
Teresa


annie13
7 months ago

@mermaidia11, you sound like a strong person to keep going through all of that! I hope the medication keeps you going in the right direction. Well done for not giving up. I hope I can be as strong in the future if I need to be.


nutshell88
7 months ago

Sad to know that smile faded for a long while.
But im so glad you found an escape from the state you were in.
This month I met a neuro lol she looked at me nervous how i walk talk sit normal she was tense all along the session.
Told her about your medicine gave her my iohone to read about guess its new for her but she said its for patient with progressive MS. Now you proved what she said by your thread and I wish it gives you good health. And first word my mother said after reading it is logical drug 😉


mermaidia11
7 months ago

Thanks to red, bok,potter, annie and nutshell for positive comments.

Nutshell, I am pleased you have the support and interest of your mum! I’m sure she would find the documentary interesting. Ldn is not just for progressive stages of MS, so don’t be thinking that it’s is just for that.
It’s the mechanism involved that is not specific to MS even. It stimulates your brain to produce your own natural endorphins, which support your immune system, emotions and your bodies own painkillers. It does seem to protect against cancer.
The calming and regulating of my emotions has been worth it alone !
Thank you for your kind words and thoughts, I survived a bad time against all odds, it does us all good to remind ourselves that the bad times never last (and nor sadly do the good – but I’ve had my fair share this week) The respite has helped enormously, as I felt my emotions were misbehaving !

You can’t keep a good girl down (especially one from liverpool lol) so apols for being dramatic. I just wanted to illustrate that there has been an improvement after only a short time , and sometimes that can be enough to get everything else on a more even keel and give you the strength to cope a bit better.

Thanks everyone, love lite and lots of delight to you from liverpool ✨🌈💝💐☮️

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