Last reply 1 month ago
Wrong

Its like addicting to a drug forever
My mind can not simply sensibly accepts treatment
Its my only option i might i will most probably have gilenya
But its so so wrong on so many levels.
I’ll be hurting myself while im fine
its hurting me deeply already in the heart and mind science in thus age cant be thus much unable to treat us more gently
They can creat super machines
Fake Robots even walk and move
I feel theres a scam

Its a very dangerous life this time its like a loss loss game.
Treat brain damage heart liver kidney
Absolutely ridiculous

Pardon for being raging

But changing my life forever and have ms treatment after 14 years is not simple it means my life might become shorter
It means my life quality is gonna collapse

MS is a nightmare out of nowhere
If it wasnt for it would never do such thing

I’ll keeps looking for a cure
While i take this treatment

As if its not there

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stumbler
1 month ago

@nutshell88 , I can understand your apprehension about not wanting to impose this drug treatment on your body. But, you do have to keep things in perspective.

Just by breathing, our bodies are under attack by the pollutants floating invisibly in the air. What we eat, whilst considered good for us now, may be seen as quasi-poison in the future.

As for all the radio waves hitting our bodies, from mobile phones, satellites, microwaves, etc……….

Our bodies are generally quite adept at handling situations.


spunky
1 month ago

@nutshell you have said for so long you didn’t want to take any dmt. It sounds like
you are being forced into it against your will. I hope that’s not the case.


nutshell88
1 month ago

@spunky I was diagnosed in 2005 and I am the one who has been refusing these treatments because I am still fine 99.99% but now drs are saying either I take treatment or I might get progressive MS that scared me a bit and made me angry at the same time I personally don’t trust medical industry

@stumbler
you are right stumbler but if i got worse what would i do with myself
i’ll take more treatment maybe stronger its annoying to even think about it


arknat
1 month ago

@nutshell88,

Fully understand where you’re coming from. This has been bothering you for quite sometime. Instead of feeling distressed/pushed, why dont you hold off until later when you think it may be needed ? IMO, at least you’ll have peace of mind and do it when you’re mentally prepared.


nutshell88
1 month ago

@arknat
Drs use harsh speculations
Which makes want to have it and damage my gut for the sake of it
At the same time it doesnt make sense
Not anywhere near nature but pure cruelty where i have to harm my self to get better


nutshell88
1 month ago

But oh well its our corrupted time
Everything is in the hand of senseless companies


californiadreamin
1 month ago

@nutshell88 I am sorry you are so unsure on what to do. Its a tough choice, but after the first pill it will get easier. However, if these are the feelings you are having you still might want to consider Tecfidera instead of Gilenya. You really shouldnt stop Gilenya once you start, so you really need to be convinced you are in it. Tecfidera on the other hand you can stop if you feel its not working well.

Even though you feel 99% great, there is still a lot going on that you that we cant see. However, you will likely never know. I really dont know if my wife should be on something stronger then Tecfidera or if its doing any good at all and maybe she shouldnt be on anything. There is just no way to know for sure.

In our family we just go with a date when we will decide something and then try to not look back. In a couple weeks ECTRIMS will have the findings for the year. Maybe give yourself until then and unless there is some amazing new research pr problem, just go with Gilenya.


londonlad
1 month ago

@nutshell88

Hope you’re ok today. I know the trouble this stupid condition brings us all. In many ways, the mental aspect is sometimes hardest. The pure unknown and torture of uncertainty.

you are very popular on this board for being open and honest. A kind lady with a funny sense of humour. And we are all here to support you!

To me it seems you are scared of the progression of the MS, so I do think you’ll benefit from knowing you are being proactive in fighting the condition. It will ease your mind once you get started and over the unknown.

You’ve shared that you show signs of atrophy, so you might need to remind yourself, that the damage of the condition may be much worse than any effects of medication.

Change is hard so it’s ok to feel scared or anxious. But try and relax and it will be fine.

Best of luck x


jolea
1 month ago

Hi
I have been on a non inflammatory diet.
It does help. Lots of fish, Omega 3, walnuts, green veg and all fruit. It does help. Take care Nutshell88. LJl. 🤹‍♀️


nutshell88
1 month ago

Californeadreamin @londonlad
@jolea
Its devastating thats all I could say
Absolutely unknown and result in a fail in both ways but as they say one path is better than other
Im still young never had any kidney lungs heart problems but i will in the far future not because of the treatments no but life path and aging and with the treatment i’ll start tomorrow whatever it is subsgio tecfidera gilenya
I’ll age before i even age it will protect my brain partly and sacrifice the other part idk absolute inhumane
I want something more legit in treatment vulnerable patients.


nutshell88
1 month ago

@londonlad
@californeadreamin
The time to start smt was tomorrow
Cancelled now 🤭
But I’ll go there discuss better options


juliam58
1 month ago

Perhaps you could do some research into HSCT??


nutshell88
1 month ago

@juliam58
I thought of it but I guess its too early for that for me


juliam58
1 month ago

The earlier you have it done the better. If you ask anyone who has had it done they always say they wish they had had it sooner before MS had caused more damage. If you are on Facebook join one of the HSCT groups and find out more about it. I am convinced that in 10 years times in the U.K. at least it will be offered as a first line treatment.

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