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in hindsight would u do things differntly

I just wondered if anyone would share experiences and anything they think they would do differntly at the start of their ms journey. Ive been diagnoised a year and had one recorded relpase which led to ms diagnosis. Ive just started copaxone (week 3) after trying a differnt dmd which my body didnt tolerate. I take a range of vitamins d3, b12, zinc, magnesium, use hemp and rapeseed oil. I juice everyday with friut and spinach and kale and limit fats and processed foods. Im trying gluten free products but do cheat.my neuro says I will relapse again on mri evidence.ive asked about trials and campath as this drug seems the only one that could holt disease activity but he doesnt use it and said even if he did he woukdnt give it to me. Would u advise to try a different neurologist. I read the barts blog and all they keep saying is to treat aggressivly at the start and as im there now should I push or see what happens with the copaxone. If u could go back would u do things differently, would u advise trying anything else or just wait and see.sorry for the long ramble but I just need to share with people who understand as my husband would say to see what happens but its my body and health and I want to be as proactive as I can ,many thanks zoe xx

H

Hi Zoe

There are a couple of minor things I would’ve done differently at the outset. The first is to seek medical help earlier when my speech went a bit odd and I couldn’t write properly instead of leaving it for 4 days. Secondly, when I had my biggie relapse which led to diagnosis I would’ve taken a couple more weeks off work and I would’ve had a proper phased return to work and not allowed my boss to make me feel guilty resulting in my doing too much too soon. I probably would have taken up yoga earlier and joined this forum earlier too.

Apart from that I’m happy that I chose Rebif as it kept me relapse free for three and a half years. I don’t believe in taking more drugs than is necessary and, even now, I did have the choice of the Campath trial but was hesitant as I’m not sure my MS warrants such aggressive treatment. I have still only had five relapses in five years so I don’t think that’s excessive. I may still choose Campath over Tysabri as that would be the lesser of the two evils in my mind but, of course, it depends what is available to me at the time.

Personally, I think you are doing as much as possible to help yourself. You are taking vitamins, eating healthily etc. Are you doing any exercise to keep your joints mobile? Given that you are RRMS I think you can take it as read that you will relapse at some point as that is the nature of the disease. There isn’t really anything you can do to stop the relapses completely (apart from Campath which isn’t available to you). As long as you aren’t relapsing frequently, then there is no reason why you shouldn’t lead an active life for a very long time to come.

Tracey xx

Hi, my mobility problems were exacerbated by baclofen.

Whilst it is a great drug for reducing spasms and spasticity, it weakens muscles and in high enough doses, can cause falls.

This happened to me and I ended up in a wheelchair very soon after onset.

I read about FES some years later and wondered if it could`ve delayed or even prevented my need for a wheelchair.

I am always a positive voice when folk here are at the crossroads of using mobility aids, particulalry wheelchairs. If someone is continually falling and endangering their very life, then i do see a wheelchair as the way to go. Life in a wheelchair is a much better one, than no life or being housebound.

So that`s what I would change…less baclofen and FES use.

pollx

Not anything I did early on, but I wish I’d been more forceful this year with getting treatment. My GP can never reach my neuro so I’m always waiting for treatments as GP is too scared to do anything.

That’s a very interesting question.

Personally, I have always tended towards your husband’s approach of seeing what happens, and I think that this has been right for me, mostly. The exception was not kicking up enough of a fuss when it was completely bleeding obvious that the trusty Avonex, after 7 good years, was no longer doing the trick. I went through 3 bad extended flurries of relapses which left permanent impairment before deciding to press for a review, and even then the neuro got in first (I have been in Tysabri since then).

So there we are - the thing I would have done differently is to have acted when it was completely obvious that something needed to change. But I still think that my general approach of ‘sit quietly and let the thing go on’ is a good one more often than not. Most things in MS take time. It takes time to get a dx, often. It takes time to see whether a drug intervention is going to be effective. There are no short cuts.

If I had my time again, I would still be pretty laid-back and not too tunnel-visioned about what I thought I needed - but I would have been more alert to the need to change course. Laid-back is usually good, but it isn’t always, and I have been inclined to forget that last bit.

Alison

Poll makes a good point about Baclofen. I was prescribed this when I was first diagnosed and my legs tended to buckle. I weened myself off it and although my legs are stiff all the time, at least they hold me up for a while. As to diet, Zoe you have the blue print we should all follow, at least on a trial and error basis. We are all wiser with hindsight but this forum is a geat place to start. Peter.

My ms has always been SPMS - now 31yrs. So l did not have a choice about dmd’s. But l have read quite a lot about Campath - and if l had RRMS l think this is what l would have tried. Keep up with you food regime - l agree with all of it. And l take a high dose vitd3/b12/magnesium/zinc. Plus l use linseeds and rape-seed oil.

Also, l would like to endorse what Poll has said re Baclofen [and tizanidine] both these meds took me off my feet - made me physically and mentally weak and feeble. Thankfully, l realised what was happening and stopped them. Otherwise l know l would have been a fulltime wheelchair user.

l do take LDN - and think it is wonderful for keeping you upbeat and positive - more able to cope with ms symptoms.

My advice is to be your own expert. l have yet to meet a neuro who knows very much about MS. And have never seen a MS Nurse. They must be an endangered species in this neck of the woods!!!

And exercise - l do as much as l can - trying to keep as fit as my wonky body will allow. lf you dont use it - you will lose it.

Apart from bombing about on my scooter [Tramper] with my dogs - l do not sit down much at all during the day. l find l am better if l keep moving about - albeit with a rollator to hold me up.

I’m a lot stronger person now that I was at diagnosis in 2007. I wish I’d stuck to my guns more regarding diet etc. and no been so easily persuaded that my belief that diet can help symptoms was rubbish. Doctors, neuros, MS Nurses etc have been trained in how to use chemicals (prescription drugs) to relieve symptoms. They don’t like their way of thinking to be challenged. You’re expected to be a good little patient and do as you’re told without question. How can someone who sees me for 30 minutes a year claim to know more about how MS effects me than I do? They don’t live with it 24/7 - I do! I know a lot of people get benefit from taking the various drugs for MS, but the idea of putting chemicals into your body just doesn’t seem right to me. We put enough in it already - our food is full of artificial this and that, before we start on water. Has anyone studied the effects of these infinite combinations of chemicals on the body? I think not. Does anyone care? No. All that matters in this world are profits. If people get ill, it’s just collateral damage. Heather

In hindsight I would have settled for a less high profile and stressful job. Without the benefit of hindsight I would grab it all while I could! Susi