Last reply 1 year ago
We might need more meds forever

I’ve been refusing meds since I was daignosed had it once and stopped it immediately
Now I can see why again
I have problem with my immune / nervous system

I just began gelinya month ago almost

I can feel wee pain in my heart
Changes kidney
Harm lungs
My back hurts me
Makes feel sleepy since i wake us apetite terrible
Pain in my legs feet akles worse than before

Why damage app that
And also a threat of having skin cancer

Even if MS get better there is a big possipily my country and body pays the price of harming my own body by having these nonesense trading drugs its like standing on a sword

Nit saying I’ll stop them
Execuse me for sounding tense but im actually furious for giving up to them

I still insist on question number1 why it harms main irgans why coupdnt go ehere its supposed to go ok i got the heart thing why liver kindey skin and god knows what

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vixen
1 year ago

Hell @nutshell88, across the world. I get what you say. What was it this time that made you decide to go for it? The trap we are in, those of us who choose DMTs is that we have no way of ever knowing, if we are better, or worse off for having them. That’s why the choice is so personal. With or without drugs, as with life, we are all slowly deteriorating, and meanwhile the companies are growing richer and richer on the back of our suffering and our trust in them.

On a lighter note, have you thought about trying something other than Gilenya? It may be that your body is still getting used to things, so maybe you can keep going a while longer? Sending you positive vibes and hopes for a healthier week ahead x


vixen
1 year ago

Sorry, that’s supposed to say [email protected] x


Anonymous
1 year ago

I forgot to say hello too beg your pardon
I got 2 new lesions they insisted
MS nurse saod believe we dont want to harm your fully healthy body
But your nervous system needs that i asked him same big quesions
That even children would ask by nature
He said we dont know we just import our only opton to protect your nervous system
Its disgusting how we may need more expendive drugs than MS drugs to treat another organ we ruined with a more expensive MS drug once mum read the price of gelinya she said they’ll never try to find you a cure
100,300.64 Saudi Riyal so lucky its free here
20,619£
26,746£
For a single box
For the drug I would use forever to “ delay” symptoms
And harm other part to give other drugs a try to make a profit on me

Its like a new sort of dangerous curroptioni apology about mispelling i was trying to sleep but my mind coupdnt i was about to cry about this no escape situation
So i held my iphone in the dark and typed

Be safe @vixen


Anonymous
1 year ago

$


Anonymous
1 year ago

I get relapses usually once in a year but last night i had a relapse i slept and it recovered whats that nightmare


stumbler
1 year ago

@nutshell88 , life is full of risks. Our bodies are subject to a torrent of radio waves, e.g. television, radio, mobile phones, wi-fi, microwaves. The list is endless.

Breathing is probably bad for us, given the amount of pollutants we put into the air.

Just leaving our front door opens up all manner of risks.

So, we’re unable to live a risk-free life. We have to balance up the risk and reward conundrum.

Disease Modifying Therapies (DMTs) are no different. Ignore the cost, that someone else’s problem. But, there are risks and rewards and we have to balance that out with the help of the medical professionals.

However, the final choice is always ours……………..


Anonymous
1 year ago

@stumbler my question is why does have to go thro all these organs to reach one point


stumbler
1 year ago

@nutshell88 , it’s all a question of physiology and drug delivery.

Taking drugs has to be practical, be it injection, infusion or oral. So these drugs will have to pass though other organs until they can have their effect on the primary target.

I don’t think it would be acceptable/practical to expect us to inject straight into, say, the brain! 😉


Anonymous
1 year ago

Of course not @stumbler -_-“

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