Degeneration of central nervus system - Myalgic Encephalo...

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Degeneration of central nervus system

cutecub_x
cutecub_x

As many of u well no, M.E is a Nuerological central nervus system illness involving literally every system in ur body

I was lucky to get an M.E diagnosis at the age of 13 after 2 years of tests, im now 35

Theres been highs & lows, collapses & relapses,

But every relapse seems to leave me with another condition & diagnosis

Lupus, & now sumthing they call FND (functional Nuerological disorder), basically the electrical signals go on a constant loop on my right side & leave me with even more muscle weakness, pain, migraines, vision & at its worst mimics a stroke where even my face drops & speach is effected

Scary stuff!

As everything seems to be related to the central nervus system, wot im wondering is if these are not new illnesses, but a degeneration of my condition

As everything is linked & everything effects each other

Has ne1 else experienced nething like rhis?

I no theres no treatment for nething, & tbh, very little hope (sorry, feeling very defeated atm & the most hopeless ive felt in my life)

I just wonder if instead of new illnesses & diagnosis as the doctors like to do, if it is in fact just all a degeneration of the M.E & central nervus system

Thanks for listerning

X

9 Replies

Hi cutecub_x, I'm sorry but can't help you on the condition but I can say that there are a multitude of ways things can improve.

I am a big fan of cannabis and would recommend trying that to anyone that is struggling with mainstream drugs.

Don't give up hope; AIDS used to kill every one that got it, not they live long lives taking the drugs that were developed. Hopefully in the near future someone will develop a M.E. drug that will help us all.

Keep on searching every avenue. I've been around a few strange corners trying to get well not to mention a trial on antiretroviral drugs. But I have gone from spending a year sleeping only awaking to vomit and sleep again, (food intake was minimal and I lost a heap of weight) to being able to be up and about and some days I don't need to lie down if I'm careful. I've been in dark moods, and I shudder to think how negative and despairing I was. Thankfully that is in the past and it can stay there.

I've made decent progress even though I am far from well. But I am determined to get there and I take every small victory as a huge win.

Upwards and onwards! Take care

cutecub_x
cutecub_x in reply to raffs

Thanks for the reply,

Yes cannibis does help alot, but sadly i cant find a decent dealer atm so have stopped smoking again.

Over the past 24yrs i cudnt even tell u the amount of things ive tried!

Ive gone thro stages of being really quite well & even worked part time as a saddler for a while

Every relapse has always taken me back to 20hrs a day in bed, & 2 to 5 yrs struggling fighting everyday to get back to a point i can even start to think of doing nething again,

I used to think it was worth the fight, pain & consequences

But after finally getting where i had aimed for for 20yrs, then losing it all once again

This time round im out of 'one day if i just work hard enough for long enough, il b able to'

& with yet another thing to deal with, ontop of everything else, no matter how much i try to pretend & fake otherwise,

I cant shake that darkest of places!

& the years of fighting ahead of me, just seem too much this time

(I do have a history of suicide attemps that really shud of worked)

I no wot ur saying tho, as life has been better, & its also been worse

I finally get wot everyone has always told me that i do myself more harm than good

As every time, every relapse leaves me with yet another condition that seems related to me, to deal with

& this new one, the right sided FND

(It caused me to break my leg as well)

I just wonder if its all the same thing, just a degenerative version not different things

Afterall, how many diagnosis can 1 person end up with

& wot will the nxt relapse leave me with

Sorry, as u can tell im not in a good place, & have finally given in & lost hope for myself

Thank u for ur kind words, & i truely hope u continue to move forwards getting better

raffs
raffs in reply to cutecub_x

I have sat at night with drugs I bought online to kill myself. I sat there several nights in a row trying to get the courage to do the deed. The pain of my RLS was ripping through my whole body I was exhausted unable to function ir think clearly with ME, lost my job and was unable to cope with the pain any more. Why didn't I do it? I couldn't do it, (even made my 'final' latte a few times :) ). as I have kids and I know from talking with others who lost someone through suicide that it decimates families. Plus I had a fear that if I kill myself I wont have learned what the suffering was trying to teach me and I'd have to life it all over again.

Since then I have gotten on top of the ME and the RLS is very manageable, (even went away for a month or so). Life is hard, very hard sometimes but it is better. I have made a purpose for my life and am planning to fight to get that done and will race ahead when I can and will crawl when I have too.

I am never too far from my laptop so please if things are getting on top and you think you are at the edge PM and I'll get back to you as soon as. Even if you just need a chat or a brief hello just to know you are not alone.

Take care

cutecub_x
cutecub_x in reply to raffs

Thank you,

It really is kind of u

Ur lucky ur family is there for u

My animals r my family

& wot ive always fought for

My problem isnt finding the courage to take the pills

I still sit staring at my prescription painkillers (& everything else)

& sumtimes find it harder not to just take 1 after another after another

Death, the nxt life, doesnt bother me, even b4 fell ill

For sum reason it just doesnt work

& i cudnt put sum1 else thro finding me another way (ie jump of a building or train tracks etc)

I cudnt do that to ne1

I used to think paying ne price physically for the few things i wanted & that ment sumthing to me, was worth it

But if all it gets me every time is losing everything & yet more things wrong

I finally get wot ppl have have always told me

& ive lost that part of myself

Im finally scared of the next relapse

raffs
raffs in reply to cutecub_x

If you have hte money and ability to get there, Dr William Weir in London is very good. I would put a large part of my recovery down to him.

I couldn't let any one get me either, would be too cruel. I am not afraid of death, never have been as I believe I go on just in another form and that is from a scientific standpoint. I don't want to kill myself in case I am made relive this life until I learn what the pain has to teach and I really only want to do this once.

I will cure myself I will get back to the old me that jogged and swam and was happy. I will be pain free and be a productive member of society. It is those thoughts that keep me going and ensure I will not give up. When I am down I encourage myself to get up, I will not be defined by illness.

cutecub_x
cutecub_x in reply to raffs

Thats great,

I used to be the same

& have achieved so much that was ment to be impossible for me

(May have taken 20 yrs but i got there, i managed to get all the things in my life i had worked everyday for.

For the 1st time in my life i was ok with myself, my life, & actually happy

Even tho the price was extreamly high)

But this last relapse,

Yet another CNS condition,

Or is it

It must all be related

Hi

Yes and I've heard of quite a few others who have also! I've recently been diagnosed with hemiplegic migraines (HM). These mimic a stroke and have the exact same symptoms as the ones you've described for your FND. I'm now on preventive medication, which is working.

No one can tell me if it's a complication of the ME or my age that's changed my migraines. All I know is that I've gone from having ME where I could keep it relatively stable, could drive and had a little independence to being pretty much bed bound. Every time I try and increase what I do, I crash. I'm at a loss.

I've spoken to my GP about relapses and she is of the same opinion as me and you, that you never completely recover to the level you were before.

Something must happen in the brain when we have a really bad relapse. I know that HM can, if not controlled, lead to an increased risk of sroke, as well as permenant levels of paralysis, yet nothing can be seen on scans. So why not ME or FND?

Basically neurologist don't know enough about how the brain works and because scanners cannot see all the tiny changes that happen, they don't believe that anything is going on. That's what happened with Alzheimer's and MS and oh how wrong they were with those diseases!

cutecub_x
cutecub_x in reply to Zebra68

Hi,

Yes thats what my 1st neurologist thort it was, as i do have migrains anyway

He was a neuromuscular consultant at UCHL (national institute of neurology & neuro surgery)

But the 'plain' neurologist i saw at epsom said that the episodes i have lasted too long

So said it was FND (which basically ment sumthings happening but he doesnt really no wot)

But if the electrical signals are kicked off into a continuous loop, then in my opinion & from wot ive found out so far,

They will continue untill interrupted by sumthing like a nerve block

Which i spoke about with my original neuro muscular consultant

& did actually work wen i was given a nerve block into my spine for an op wen broke my leg cos of it.

My brain scans have changed over the years, especially the T2 sensitivity ones i think they are

& show an increase & worsening of 'white spots'

Im sorry to hear u going thro similar

As wudnt wish these things on ne1

But in a way also kinda niceish to hear that im not completely alone in the way the relapses ended up leaving me with so called new conditions

There do seem to be different sub groups of M.E

Thank you

X

My heart goes out to you, it's too much, especially for some one so Young and no support, thank god for animals. It's heartbreaking to hear your story. I send you a wheelbarrow full of hugs. Dr Sarah Myhill is very interesting, I have found some of her suggestions very helpful..

I have had ME for 30 years, I can see light and hope now. Please take very good care of yourself cutecub. You have so much on your Young shoulders. Hugs x

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