New bout of relapses, MRI, and Treatments?

Everyday living
1

Hi everyone hope you’re all keeping well.

I’ve had a relapse, first big one since being diagnosed 10 years ago. It’s happened in my left eye I can’t see detail out of it only a blur, I can’t read out of it, I’m writing this with an eyepatch on my left eye it makes reading easier although I’m making spelling mistakes all over the place so writing this on word first. I knew what it was straight away, from being fine to no detail in about 36 hours. I thought it was optic neuritis and went to the eye clinic to get it checked out, no optic neuritis but no doubt its neuropathic, the brain the doc said. Between this and the fatigue I had 6 weeks or so ago I think the MS is active again, sure feels like it anyway.

So I’m going for a MRI in 2 weeks to see what is going on in this brain of mine. It’s my first proper full check-up in 10 years since my diagnosis really. When I was diagnosed I only had 6 lesions that were showing from my 2 MIR’s that I had. I’m a bit apprehensive of what is going to show up this time. So I was wondering if you wouldn’t mind answering a few questions to help me focus on my situation and be a bit more prepared for the unpredictable if that’s ok, but only if you want.

When you had a further check-up further down the line from being diagnosed, MRI’s etc… what was the increase in lesions on your scan results?

What sort of DMD’s / DMT’s did you get put on?

Do you find them effective for you?

Has anyone tried any of the trial treatments?

Also I do take my fair share of vitamins, oil capsules and eat healthily, I’ve spent some time in the oxygen chamber etc…

Does anyone take anything specific other than the normal oil supplements I’ve heard they can be beneficial?

Do you go for any other types of treatments?

Massage therapy, transcendental meditation that sort of thing?

I’ve heard that Reiki healing therapy helps with other things anyone tried that?

Thanks for reading and sorry about the amount of questions, just in a bit concerned at the moment.

I really would appreciate any help and advice from your own experience.

Thanks and take care

David

2

Hi

i am on copaxone which for the moment is effective enough for me

i haven’t been on any trial treatments.

i take 5000iu of vitamin D daily, dontt take anything else and I try not to eat junk.

i practice Vedic meditation twice daily (similar to transcendental meditation). I haven’t had a relapse since I started meditating back in July 2015.

hope that helps xx

3

hi david

sorry that the beast has raised its ugly head.

i was on copaxone for 4 years until my injection sites gt so messy that i was switched to tecfidera.

i take amantadine x 2 in the morning.

betmiga for a wayward bladder.

a multi vitamin/mineral

and my tecfidera.

i have had reiki and the therapist noticed that my legs were of uneven length.

he passed me over to an osteopath who said the my hips were out of alignment.

3 appointments and a lot of pushing /pulling and i was fine.

i had the CCSVI procedure and that was amazing but sadly it didn’t last long.

i do mindfulness meditation which helps a lot.

carole x

4

Hi David,

Sorry to hear about your relapse.

It does sound like optic neuritis, I have had it a couple of times I’m sorry to say. It is probably the part of your brain that controls the optic nerve that has been affected.

I have had ms for 10+ years and apart from an unsuccessful attempt at tecfidera I am not taking any DMDs.

​I m however following the Overcoming ms programme (details of which can be found online).

The plan involves diet, mindfulness meditation, flax seed oil supplements and vitamin D.

I also have monthly B12 injections.

I would recommend looking at the OMS programme it’s very informative and positive.

I hope you begin to feel better soon.

best wishes

Anna

5

I’d like to hear about people’s relapses from the point of view of length of time to heal and whether it’s normal for some symptoms to end and new ones appear within the same relapse ?

thanks

6

I was only diagnosed last August so possible too soon to say, but from my experience so far I’d say yes, its normal.

I had a relapse in June 2016 (which the neurologist said going off my history, was probably in fact my 4th relapse), I initially improved over the next couple of months but then in the beginning of September had another relapse with a couple of new symptoms which 7 months on are showing no signs of easing, plus I’ve had new ones appearing, oh joy of joys!

I’m guessing this is just how life with MS is going to be. Le sigh. :confused: