rachaellouise 07/02/18
Last reply 5 months ago
Me again … trapped

Hi all
Can I just ask did anyone go through or goes through this feeling of being really trapped by the ms diagnosis …. so trapped you feel overwhelmed …. I feel like I’m in jail! Feeling hopeless !

I Can get angry but I’ve started to think what’s the point ! It won’t change anything … I have MS … it’s really surreal … what’s going to happen to me? No one knows ! !

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


rachaellouise
5 months ago

My options are looking slimmer

Heal naturally- lifestyle
Dmd
Stem cell s
That CCSV1 looks a possibility but limited to how long it lasts

No cure ! Why is their no cure ? What hope is their if the answers above don’t work
Touting a cure but how much longer till one comes along ?


edmontonalberta
5 months ago

@rachaellouise

Imagine there is no cure & never will be – seriously.

Live your life within the limitations placed upon you… Given the option of moping & being depressed; or enjoying life – I choose the 2nd one; and life is good.

Out of curiosity, how are the Yoga classes going?


rachaellouise
5 months ago

@edmontonalberta

Why do you think their will never be a cure?

Yep yoga classes have been postponed at the moment as I need to get stronger and less dizzy ! So back to working with Physio , ms gym and balance training , walking.
Honestly I’m not going to say never though just have to listen to what my body tells me !

How far are you along the ms journey?

Rachael x


californiadreamin
5 months ago

@rachaellouise

I think CCSV in recent studies has been shown to be ineffective. I would think hard before considering that.

The options you have are still pretty good (many dont have DMT’s as an option for instance) and they arent exclusive. Lifestyle and DMT’s fit nicely together.

I wouldnt give up hope on the cure. In fact, I think there is a drug in development right now that might be the cure (maybe a long shot but very promising). Lets see how the results go in the next year or two. Its not going to fix any existing damage, so try to stay as healthy as you can: http://www.atarabio.com/pipeline/ata188/


lilbird
5 months ago

Hi @rachaellouise yes I definitely felt the trapped sensation early after diagnosis. I wish I could give you the secret solution but I’m not really sure exactly what got me past that stage. I certainly wallowed in it for a while but at some point I started a combination of lots of reading & research, lots of sleeping(!!!) & trying to keep busy & distracting myself. Somewhere during all that ms stopped being the first thing I thought of when i woke in the morning & the only thing i thought of when i thought about myself or my future. I guess i just decided that no amount of worrying about it was going to make it go away, quite the opposite, & so i needed to figure out how i was going to tackle it & that for me was to research treatment options. I think i felt that once i was up to speed on what this disease was all about & had started treatment then id done my bit to regain some control & could start to move forward. I don’t know if any of this is really helpful to you but at least you know that I no longer feel trapped so hopefully at some point soon youmwont either 😊 x


edmontonalberta
5 months ago

@rachaellouise

I am not saying there will not be a cure but there might not be – so why have false hope? Nothing is worse than a dream taken away.

I don’t look at new cars or million dollar houses; I don’t look at vacation spots with cobblestone sidewalks or require a long plane flight since I can not do that (my wife is going halfway around the world in three weeks)..

While she is away, my plan is to help organize the Slo-pitch season, play bridge, go out for dinner with friends, etc… I will enjoy life within the limitations placed upon me. Basically I am a realist.

As far as my MS journey goes, I am guessing I have had it for five years – was diagnosed a year ago. My personal physician & Neurologist are doing nothing to help. My appointment with my surgeon is probably six months away; I am hoping to get another MRI to see if I need another spine surgery. Whatever happens, happens…

Life is a journey & we all know the destination – have fun along the way…


rachaellouise
5 months ago

@californiadreamin – hi – I am sorry but I never thanked you for all the info and YouTube articles you sent on one of my posts. I am sorry.. I have saved them . It must have taken you sometime So thank you 🙏
As for it’s good news if a drug will stop ms but what about damage already done too. We need both but one is better than none – I would be grateful though
. That EBV – if 85% of people get infected then why do only some get MS?

@edmontonalberta

Yes medical services are really going to the dogs! Rubbish service for you !
The things you have planned sound nice- I think you will probably have a better time. It’s the little things that are the big things! 😊

@lilbird – when is my moment going to come then hey? 😊 Hopefully very soon – soon released and free like a bird 🦅
I suppose all different I started loss of research and implementing lots as soon as I got diagnosed . Now it’s sinking in more and what I can do to help is getting narrower. I need to get faith from somewhere because I started the Whals protocol in August last year and I have been on it ever since. Noticed a few minor changes and big weight loss . Hoping for more significant changes but time is a healer and things take time as dr Whals says, so I will have to hold on to that and keep going. It’s really testing my resilience and willpower I tell you!
It gives me hope that you got out of this shackled feeling and free!


californiadreamin
5 months ago

@rachaellouise

Sure thing on the videos. Regarding EBV its almost 95% of the population that has it. However, the thinking is the other way. If you dont have EBV you cant get MS. So the theory is that somehow EBV is one link in the chain to get MS. Almost everyone is sure EBV is somehow related to MS. The question though is if you remove EBV do you stop the MS or did it set off a chain of events that no longer need EBV to continue occurring. The drug listed above is basically answering that question. And while the results arent in, I really think the work Dr Pender did showed improvement in people with PPMS when none should be expected.

Another thing about damage thats already done. If you stop MS you dont get back what you lost, however there are degrees of loss. Of the neuron isnt dead or there is capacity to work around the loss you can actually see repair as your body stops fighting the MS. This has been shown with improvements post HSCT. Somethings dont come back, but lots of people have had EDSS scores that actually improve.

There are other drugs in the pipeline as well to help repair, but I dont feel that hopeful anything is close. Most drugs fail , so even the news we hear about promising things, dont end up panning out.


nutshell88
5 months ago

Yes i did in the past. I gotta admit living 3 years in the uk solved a lot of dark years in my MS history. Not because uk is better or worse but changing the whole emviromints seeing new things street people roads event activities that never reminded me of the MS i was struggling with back home but when i returned home now last thing I desire is leaving it not for a single day.

I hope you feel better soon
You deserve better be sure of that


noelie
5 months ago

@rachaellouise have you seen anybody to help you with the diagnosis? i’ve seen lots 🙂 CBT, group therapy. etc… and it still took me more than a year to come to term with it. It has had such a huge impact on my life in such a short time at the worse possible time. The funny thing is, when you are more comfortable with the whole thing, then health seems to improve. Are you on any DMT yet?

One mistake i made was to isolate myself after diagnosis, I hope you’re still seeing your friends and family. It’s easy to get caught up in reading and only watching everything there is about MS, it’s understandable at the beginning but there is a risk of ending up in a little bubble which is not a very pleasant one. There comes a point when one needs to look at what’s going on outside, take part in it and then with time, enjoy it. It’s not easy, you have been diagnosed recently and it’s a lot to take in. For a long time, I couldn’t mention MS without bursting into tears (hence my isolation coping strategy).

Yes, there is no cure at the moment, no medical way of reversing nerve damage, so rather than hope for medical advance and the discovery of a magic pill tomorrow, I decided the best strategy was to avoid further damage, and that means avoiding stress. Easily said. I’m meditating every day and that helps a lot, along with diet, exercise, and rest (a new word in my vocabulary). Taking positive steps makes me feel a little bit in control.

Time will help, MS sucks but you are still in charge of the choices you make.

Take a break and look after yourself, you’ll get through this, and find a better place. xxx


lilbird
5 months ago

Well if I’ve given you some hope @rachaellouise then that’s a really good place to start! Glad what I said was helpful 😊


cameron
5 months ago

@rachellouise , what changed it for me was what my consultant said when I met him following my diagnosis. He said: ‘I’m not telling you that you’ve got a terminal illness. You have a long term condition and it’s up to you to manage it’. Suddenly, I realised I had a lot to do…


chezy17
5 months ago

Ok I may be bad cop in this but I’m gonna say it anyways! Snap the flip outta this funk!!! You have so got this, you can’t change what it is so it’s wasted energy in trying! Enjoy the what is, that is what you focus on, the here and now!!! The cure that everyone wants isn’t happening for now but living your life is!!!!
I never chose my life as it is now but it is what is so I’m where possible I’m gonna take it by the horns and ride it!!!
I’ll be damned if I’m gonna let this take over my life and miss out on all the little things that life shows. It definately ain’t passing me by chick 😘


mmhhpp
5 months ago

I always feel trapped ! I have spms and going down rapidly but i trust time. Everytime i go one step down i rant cry …until solutions are found and then you feel better again. People above have given you good advices @rachellouise

@californiadreamin your answer is good i was a scientist i read about ms every day…..,I would have said the same! Ebv is hot at the moment aparenty ms could be caused by more than one factor ..,,are you a scientist?


stewhalley
5 months ago

Rachel, who’s your consultant, just being nosy.

Post Comment

You must be logged in to reply to this topic.