Last reply 9 months ago
Should I be afraid of my silent MS

Hi all

I have well damaged brain. But I get no relapses at all I think I am 0.0 on EDSS or 1.0 since I cant balance going down stairs.
But years months days events happen I wear high heels and more but I’m not on any treatment.
I’m afraid its not attacking me now to save it for later I was daignosed age 17 now I’m 30. From Saudi Arabia.
I dont trust any treatments I just live natural life work eat shop ect.
I mentioned before I even got atrophy in my brain.

What I’m sure about no matter how many people proved how important treatments are I dont feel the need yet.
But do you think MS is hiding something I’m not worrying kind of person but reading stuff online shakes my over confident maybe false hope ._. Hopefully not.

Cheers

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hmcampos
9 months ago

I guess nobody really knows how MS truly works but I dont think it is saving for later. Relapses may come later, or sooner but MS is kind of unpredictable as you know well.

In any case please be VERY careful with what you read online, false hopes, bad intentions, hyped symptoms may influence your mental health and your state of mind and, therefore, push those relapses to sooner rather than later.

Be happy, be confident and live well @nutshell88.
H


nutshell88
9 months ago

Yes, I better be careful and not over stress my self. hopes get high so easy considering the fact i dont get relapses till now but its MS as you say. We can never predict whats next and when..


hollylb10
9 months ago

My last relapse was exactly 3 years ago now! I have been on meds for the last 2ish years but just come off them. I have a scan next week so I am interested and also scared to see the results! Sometimes I forget I even have MS and I can’t say it holds me back as I live a normal life. Although I have been getting pins and needles this week in my arms and legs when I sit/sleep funny!


londonlad
9 months ago

@nutshell88

I enjoy reading your posts and comments. you have a lot of positivity and i am sure that attitude helps your MS, as i really believe the opposite, nerves and anxiety can amplify our symptoms.

That said, from all the research i have done, i am happy that i decided to go on medication. I am the type of person who generally doesn’t like to take medicine, so going onto new unknown one to me took a lot of consideration. Yet, with the fear that my MS could get much worse, it was ultimately the right decision for me, in the end

I have learnt MS, even without medication, the relapsing remitting type, can often be (appear) dormant and silent for long periods of time. You won’t even notice you have it. I wrote “appear” as it is now believed damage can be occurring in the background, even when we don’t have visible symptoms. This may explain the fact you have brain atrophy. i had 10 lesions at onset, yet didn’t know i had MS.

There may be a small % of people who can have a very mild form of MS their whole lives. the term benign MS is used and it sounds like this is not a fully proven course. Its only with the benefit of hindsight after someone has had MS for a long period, can the term be applied. I personally am not willing to wait, and in my eyes gamble, to see if i will be lucky to avoid a severe course.

That said, in the end, medication or not, currently there is no 100% full proven method to resolve MS. However, treatments are very effective these days, and combined with other lifestyle choices, there appears to be way too many numbers of people demonstrating benefits for me to ignore.

the medications are used to reduced the number of relapses. it could only take a few more relapses in ones lifetime, to dramatically increase the level of disability we may have. So any possible reduction of this, is very welcomed.

I respect your decision to not take medication, yet its not one i agree with for myself. The risks associated with my medication tysabri, are well documented, and they have good protocols to minimise them. the risks are ones, i am willing to take.

there continues to be advances in treatments and there is such a big range of them, that there is something available for people with varying risk appetites.
i wonder if you might benefit from speaking to a doctor, explaining your fears of the stronger medications, and maybe they can find something suitable?

best wishes,


nutshell88
9 months ago

Hi @hollylb10 yes thats exactly how I feel I have normal life pins needles dont lst over 5 minutes so i dont bother I know fair well my mri scan in 2014 showed atrophy i was afraid at first but now 3 yrs passed after this scan and i keep getting better hehe that scan was in the uk i am originally saudi but i stayed in the uk 3 yrs 2012 to 15
And was daignosed 2005 i am still fine had treatment 2010-2011 those were the only yrs i was on a treatment thats y im kinda anxious to try again ._.


nutshell88
9 months ago

Hello @londonlad I have samr worries about being on treatments. I kinda think of them daily or why would I join this forum hehe
You a very good point of view based on fact. But as you also said side effects are a big concern i want to ease ms and keep its symptom as far little easy as possible but not in the benefit of another organ :/ some treatments might effect the heart where how would i cure my heart and brains at the same time other that some might effect liver and kidny ect those are main life organs its quiet scary.

I talked to my dr in edinburgh and to a prof in 2010 he said i may not reach 2011 i’ll be bedbound if i didnt take tysabri i cried in manhattan. But came bk haring all treatments i talked to 4 drs here they all agree on treatments r important.

I asked my neuro to prepare interfereon ._. But im afraid i take it and leave it as always.


angieh
9 months ago

Hi,
I can certainly understand your thoughts and fears about taking medication. I have quiet MS as well and went for nearly 20 years without a relapse! I really kind of hoped my diagnosis at age 29 was a mistake!

When I was diagnosed, it was during a flare up including right eye paralysis, weakness, migraines took about a month to bounce back. 20 years later, I’m 50 and after overextending myself severely for over 2 years with work and taking care of others, this relapse hit hard, it has been 9 months and I still haven’t completely recovered, may never be the same. It is a constant feeling of dizziness/lightheadedness and severe fatigue among other vague symptoms.

MRIs show significant increase in number of lesions (I didn’t even have and MRI in those 20 years). So I can attest to multiplication of lesions in the absence of any real symptoms. I now have a lesion on my c spine as well which I did have not in the beginning. I wish I had known about the possibility of MS activity in the absence of symptoms, in the beginning, maybe I would have been more comfortable with taking medication. It was suggested in June I start Gelinya, but I decided not to, I am afraid of the side effects. I will now be followed with yearly MRIs, but at the next if it is worse, I feel I’m going to have to take something, I guess it’s worth a shot.

I would just urge you to take really good care of yourself (as we all should), be gentle on yourself, be followed by your neurologist regularly and don’t assume nothing is happening in your brain just because you don’t notice it. Best wishes to you.


nutshell88
9 months ago

Many thanks @angieh i began to convince slowly of taking treatments after what you said. Specialy that in 2014 mri showed atrophy in bottom right of my brain and of course atrophy jeeps growing. My neuro in 2014 was scottish and she panicked she said nothing left tillbit reaches tge spine. Its my worst fear i see my neuro yearly do mri yearly or every couple of years.
Thanks again everything you said will be considered. I hope you get better soon. And get your sight back.

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