Last reply 4 months ago
Confused

Hi, so dont know what to do. Ive known about my Ms over 7 years and only had 2 relapses. Ive also only ever tried 1 drug… Avonex for 6 months and then came off it as I felt it was effecting quality of life. This week Ive found out the results to latest MRI…3 new lesions and enhancement of existing one.

Ive seen a few Neurologists and they all give me the same advise; start treatment ASAP, any treatment as long as Im on treatment. Ive done so well without treatment and kept stable without treatment.. Ive just taken high doses of vitamin D and B12 and tried to stick to low dairy, low red meat diet (sort of trying to stick Professor Jellinek’s OMS diet).

Although I havent had a clinical relapse in over 4 years, this is still considered progression as its radiological (a silent relapse if you like).

Im stuck with trying my luck with a treatment or do nothing. Its not like Im anti medication but I just dont know if its worth taking any medication with only the possibility that it MAY delay the progression of this disease and a certainty that it will have ongoing side effects aswell as damage my kidneys and whatever else.
I feel like its a catch 22.

Ive reduced my work hours after my 2nd relapse. I live alone and support myself. Should I progress with my condition or feel ill regularly due to treatment I wont be able to work. Government benefits will not be enough to cover my rent let alone living expenses.

Help, let me know what treatment youve taken and if its working well for you, or just let me know your thoughts.. thanks guys.

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stumbler
1 year ago

@kitty , oh for a reliable crystal ball! Regrettably, we can’t see the future, we can just see the past.

And, the unwelcome truth from your past is that your MS is continuing to nibble away at your Central Nervous System (CNS). Fortunately, this latest activity hasn’t caused a disabling relapse, but what happens next……….

Each of the Disease Modifying Treatments (DMTs) come with risks, but these are known risks for which you will be closely monitored. There are also now about 12 different DMTs available, from injectables through infusions, to oral.

You’ve tried the natural approach, but this has not prevented your MS progressing. So the question is really one of is the threat of a side effect from a DMT greater or less than the threat of MS giving you a disabling relapse?

And the complication behind this conundrum is that a disabling relapse cannot be undone.

DMTs are a form of insurance for our future. So, do your research, https://support.mstrust.org.uk/file/MSDecisionsWeb.pdf , and see if there is now a treatment that suits your lifestyle.


simone2
1 year ago

Hi, I took copazone for 6 months but stopped due to awful side affects that was over 5 years ago, now I don’t take any meds it was a hard decision, my neurospecialist wasn’t happy with me stoppingDMD but the terrible side effects affected my life so much,I follow a strict diet best bet diet no dairy,gluten and sugar its hard to stick too but I havent had any relapses since starting the diet 5 years ago and feel so much better on the diet, I also take lots of supplements.
email if you want more information
Sue


kitty
1 year ago

Thankyou simone2 (Sue)… Email address ?


kitty
1 year ago

Thanks Stumbler and for the sites.


spunky
1 year ago

Hi
I am on Aubagio and besid s a sore stomach/loose stool for 2 weeks and hair shedding from months 3-6 I have had no other side effects from the drug. BTW all the hair came back and I’ve been on the DMT for over a year now and it very easy to take in pill form once a day.

Best of luck in whatever your decision is.

Spunky


tracyd
1 year ago

@kitty

Feeling good, not having physical relapses is great, but your MRI has shown that your MS is damaging you regardless, it’s causing scar tissue in your brain which when it breaks down causes reduction in brain mass (brain atrophy – which happens naturally – our brains shrink as we get older – a person with MS’s brain will shrink more quickly as those lesions we have accumulated break down)

Lesions happen quietly and steathily in the background until one day it takes a big bite at something important and the damage is so great that physically it manifests as relapse symptoms.

You say 2 relapses in 7 years, but your lesion count is double that.

Whilst not relapsing and feeling awful is classed as a ‘doing really well’ for someone with MS, the accumulation of lesions in the brain and spine tell a very different story ….. it shows the condition is progressing and damaging our brains and spines even if we aren’t physically deteriorating and suffering that we are invisibly ‘rotting away’ from the inside

Living healthy, getting plenty of fresh air, excercise, sunshine, fruits, vegetables and water, all those things that we know we should do just because we are ‘humans’ and that’s what is recommended for us all to just maintain ourselves well. Whatever works for each of us, as long as it’s good for us, but backing that up with a badass DMT is … well it’s our ‘safety net’ our ‘protection’ from MS.

There are many wonderful new DMT’s which can stop the progression in it’s tracks stop more lesions forming. Not all of these treatments require you to regularly inject or infuse or take something each day. All treatments have their side effects (but then so does coffee and tea)

MS uncontrolled has a lot of really nasty ‘side effects’ we call them symptoms and relapses and all sorts names …. but they’re all ‘side effects’ and unlike the ‘possible side effects’ of a treatment the one thing that is absolutely guaranteed is that untreated the ‘side effects of MS’ WILL get worse and what form that worse might be is anyones guess but the side effects of having MS can be pretty devastating.

You have a friend request if you want someone to talk to I’m happy to share contact details.


potter
1 year ago

I had two aunts that had MS before there was any DMT’s. One aunt had it so bad she was in assisted living by the time she was 32. When I was diagnosed ten years ago the first thing I ask was when can I start taking drug treatment. I knew what she had went through before she died at the age of fifty. I was on Rebif for 5 years and I have been on Tecifdera for 4 years. Once I got through my first few months with Tec things have been great. Easy to take, no relapses and blood work comes out good every six months. Potter


simone2
1 year ago

Hi, Kitty, you can send me a private email but not sure how you do it!!


kinga
1 year ago

Just to add that Dr Jelinek does not oppose taking DMTs so perhaps its worth having a go…

@kitty Just to add that while it may slow progression its important to note the delays are averages. You have every reason to think that if you dont see progression on the MRI it IS in fact slowing progression. Getting an MRI in 6-12 months after the DMT is started is a good way to see if it is in fact working for you. At some point it may stop working and you might need to switch medications, but imaging now gives you the opportuntity to see how well things are going before you experience a relapse in hopefully many situations.

My wife takes Tecfidera and the long term effects are generally monitorable so you have the opportuntity to stop the medication if there are indications of anything going astray and allow your body to recover. Many of the side effects that are more serious were discovered over the years and are now watched for. So going with a medication that has been around for 3-5 years gives you at least insight into the likely problems.

We follow OMS carefully in addition to Tecfidera.


andydav
1 year ago

Initially I was on Rebif until the irritating skin redness at the injection sites and the lack of decent site to inject pissed me off so much I was intentionally missing injections. After discussing this with the MS nurse and neurologist I was placed on a Teriflunomide (Aubagio) trial within the Brighton area health authority. I have taken this medication for the past two years with no side effects (bit of hair loss, now OK). I have blood tests every three months to check my liver and blood count to monitor the drug (all good), I’ve had two MRI scans with no new lesions and no relapses for six years. One tablet a day, better then three injections a week. Been good for me.


kitty
4 months ago

@spunky, thats great news. Hope youre still doing well.


kitty
4 months ago

@tracyd, I hear you. However everything I have researched and read says that all available DMTs do not stop relapses however, may delay the progression of this disease they do not guarantee delay in progression.
The research also indicates that these drugs do not stop MS symptoms and if anything add to them with their side effects. Is putting our bodies at risk to all the side effects and dangers worth the risk for only a possibility of a delay in progression. Yes Drs will monitor you whilst we are on these drugs but when i asked if damage could be reversed the reply was possibly (they would not give a guarantee.
I feel its a catch 22. Also that you need to look at what level of progression youre at and risks invloved based on which DMT chosen. Its hard because what may be good for one may not be good for another. You basically need to be a guinea pig and with some luck find one that works well for you.
Ive heard of several friends who have tried several different DMTs yet theyve progressed and symptoms worsenned by DMTS. Then Ive heard of others curing themselves with diet and supplements. Ive been undecided right from the start and I guess i’ll have to live with whatever I eventually decide 🙁


kitty
4 months ago

@potter, thats great news. Do you have MS Symptoms or have you come back to full health since taking DMTs?


kitty
4 months ago

@kinga, I actually contacted him directly, he only ever took Copaxone for some years then stopped. Ive read his books, he doesnt actually say not to take DMTs but doesnt promote them either. I guess it would be somewhat unethical for him considering the field he worked in. Ultimately his story promotes what he feels worked for him.


kitty
4 months ago

@californiadreamin, thats true chosing a DTMs that has long term studies is better than one that has only recently been approved and using it in conjuction with OMS diet is even better.
Hows she going with side effects ?


kitty
4 months ago

@andydav, glad its worked for you. Hows it all going ?


vixen
4 months ago

Hello @kitty, hope you’re feeling OK today. With or without DMDs, the truth for all of us is that we are all living with a progressive disease. But as with all adults, we are all ageing, we all take medicines for other there are never guarantees. Equally, there are no answers, no rights and wrongs. I take Tecfidera butI have absolutely no way of knowing if I’m better or worse off without it (although my last MRI showed no new lesions in 2 years). A wise man once told me (this is really true, he really was a wise Indian sage!) ‘If you have a good heart, you must always follow it when it tells you what to do. Even if it causes hurt, your heart is never wrong.’ So, some might think that’s bunkum, and it does sound weird, but it’s always worked for me…….x


kitty
4 months ago

@vixen, yeah I suppose only God knows… thats I suppose if one believes in God. Thanks x


embroideress
4 months ago

@kitty This question of DMTs or not would be an interesting question if our lives didn’t depend on it, the quality of living each and every day with our choices. It’s easy for the doctor to say, “this is what we’re prescribing these days, it seems to be working for many people, here are some statistics.” We want to be individuals, not see how we might fit in a statistical chart.

Your use of the term guinea pig is indeed telling, and that is the term my husband used too, as we were discussing treatment possibilities. He’s a research scientist (he doesn’t work on ms, but on muscular diseases) and he sees the way things work behind the scenes, so to speak. They are trying treatments out, seeing what works. Doing the best they can with what they know, one would hope.

I too think that eating well (low carb, no meat, intermittent fasting), exercise, meditation, reducing work hours, etc should be enough, and I really have no desire to take a DMT. I had 35 years of no visible relapses, from optic neuritis as a teenager, at a time when there were no MRIs or treatments, to now with a sensory relapse that I’m still recovering from since February. I do have lesions, so ms has been silently working without my knowledge.

I am going for an MRI today, another one next Wednesday (spine + brain) and if the neurologist suggests treatment, I’ll be making a decision soon.
Perhaps, with clean healthy living, we can reduce the side effects of our chosen treatment, or change to one that gives us fewer problems and ‘agrees with’ our lifestyle. Catch 22 (my mom would always say ‘damned if you do, damned if you don’t’!) definitely.
I’m sending a friend request if you’d like to discuss.


spunky
4 months ago

Hi @kitty
I am doing well and hopefully you are too! Did you end up starting a DMT?

I am still on Aubagio (more than 2 years) and still no side effects for me. My mris have been stable and I have not had any relapses since I started Aubagio.

How are you feeling?

Spunky


kitty
4 months ago

@spunky, so your side effects stopped after 6 months ? Do you have the usual MS symptoms though ? Fatigue, muscle weakness etc ?

I’m ok not sure if Ive progressed because need referral for follow up MRI. My Neuro has cancelled the past 2 appointments and rescheduled in October. Sometimes I wonder if she does it intentionally because I wont take DMTs. I think I am still stable. I get fatigue, pain if I walk up any incline or more than 20 steps, burning skin on legs and back mainly at night which prevents me from sleeping. Other than that to look at me you would think I am fine.


kitty
4 months ago

@embroideress, I stopped taking Avonex based on effect on quality of life. Even after the side effects settled, I still felt sick everyday…it was just there, subtle but there and on the day I was due my next injection I felt great, therefore I knew it was the Avonex keeping sick.

Im hardly on this site. I forget, can we private message on here ? How ?


tracyd
4 months ago

@kitty

I had Lemtrada round one in May 2015 and round 2 a year later. I was diagnosed in November 2014 and in the time between then and the following May I had 6 massive relapses. Each confirmed as clinically active disease by MRI with new lesions appearing on each MRI liberally split between my spine and brain. Within 6 months I was losing my sight and my ability to walk.

When I had my treatment it had completed trials and been released for use so I wasn’t a guinea pig for it, there had been wonderful people before me who had done that.

I’m now 3 years and a week on from starting – 2 years on from completing both rounds and unless I ever relapse again or get new disease activity I won’t need any further treatment for MS – I’m now clinically confirmed as NEDA for 3 years (no evidence disease activity)

Here are the answers to some questions I’m asked :-

– Do I still have MS? Yes
– Do I still have some symptoms? Yes
– Have I had any new symptoms of MS in the last 3 years? No
– Has my brain shrunk more than a ‘normal person’s’ would? No
– Have my previous symptoms improved or gone away? Yes to both
– Did I get away Scott free with potential side effects? No I have to take a thyroxin tablet each day because I was one of the lucky 30% who win a funky thyroid

I drove into work today to my full time senior programme manager job in telecoms. I’ve walked up and down the stairs today 6 times already and I’m expecting to do it a few more times before the day is out.

I’m just going to get my low carb lunch from the fridge (salad with avocado, bacon and cheese in a spicy dressing)

Later I will walk my 3 dogs, make a lovely low carb dinner and probably enjoy a few drinks because it’s friday, it’s a 3 day weekend and because I can.

I don’t regret my choice for a moment, it gave me back my choices and life. It’s not for everyone, but for me it was perfect


embroideress
4 months ago

@kitty I sent you a PM


embroideress
4 months ago

@tracyd I’ve been reading your blog, you’re so courageous and positive! Even in this thread, you finish by writing all the things you’ve done today already, and will be doing later on. Very uplifting!


potter
4 months ago

Kitty I still have the damage from when I was first diagnosis, mostly my legs go numb after standing or walking to long. I did have a mild relapse right before Christmas last year. I have totally recovered from it, I believe I had it because I was doing to much. I was taking care of my elderly mother in-law. I was shopping, cooking and taking her to all of of doctors appointments. Other relatives stepped in when I was down and out for a week, they continue to do those jobs I just buy her groceries now. Stress will do you in. Potter


tracyd
4 months ago

@embrioderess thank you for the lovely words.
Apologies for the infrequent blog updates of late, but the whole changing jobs thing and the opportunity to get out and enjoy the British sunshine was just so very distracting.

I’d promise to be better, but the sausage and cider festival over the weekend and a chance to catch up with old friends in Bramley just seems too good to miss 🙂

@kitty
To add to what potter has said, stress really is the biggest factor I’ve faced with MS, I have to rest I have to problem solve my way out of stress because if it carries on it literally weighs on me and exhausts me.


kitty
4 months ago

@tracd, great news dispite the thyroid issue. Keep having fun.


kitty
4 months ago

@potter, yes 100% agree that stress is a major contributor. Im sure my relapses were all stress related based on what was happening in my life at the time.


vixen
4 months ago

Hi, I meant to add to my previous post regarding Tecfidera. I recently underwent a big stress event, then had throat infection and stomach bug, so I knew I’d probably get a relapse. Sure enough I did, but although old symptoms resurfaced the relapse was very mild and not debilitating at all. MRI showed no new lesions and neuro said that the Tec had been effective in reducing the severity of the relapse so I’m happy with that….


grandma
4 months ago

Hi Kitty, you have a big decision to make but keep in mind, each relapse leaves you with a little bit more permanent disability.

I was on Avonex for 23 years, when I was given it (after agreeing to go on the original trial) there was no choice of DMT, Avonex was the first, it suited me so well apart from the flu symptoms which I dealt with by injecting myself at 9 at night so 2 hours later when the symptoms arrived I was asleep! Last year had 2 major relapses in 4 months (probably due to stress cos the other half of 43 years left, DLA got changed to PIP I am now awaiting tribunal to get Mobility Car back after 19 years) etc., so was changed to Tecfidera, which I have now been on for 5 months, usual side effects for first few weeks and they have all gone now so I shall be continuing to take it, anything to stay as only an occasional wheelchair user and on my feet around the house and garden, walking dogs on mobility scooter all the things that life worth living even with ms. Concentrate on what you can do not on what you can’t and keep fighting. Get mad not upset!😍 Jill


bernadette
4 months ago

exploring the options of DMDs even if you choose not to take one may give you a sense of being back in control of ‘the thing’ – as i call it
from experience, and from other bloggers, and research evidence imo trying a DMD is a no brainer (pardon the pun) even with all the potential, and actual, side-effects.
Hit the thing as hard as you can tolerate with the latest drugs is the approach of the expert neurologists, the old approach is to leave it alone.
I live solo and support myself & while it can be hard I often think living with others would drive me nuts, because i am an irritable grumpy person on a bad day, I also need a lot of calm quiet time, and because mostly others so not get it.
best of luck to you

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