Last reply 9 months ago
Really not happy with my medical team ..

I’m having a bad time at the moment had relapse and steroids a few weeks ago .
I’m just fed up of being treated badly .
It’s like they think we have all the time in the world – we have lives or want to have a life
Just because my body got sick doesn’t mean I don’t want a life

They Just mess around . It’s all stressful anyway , time off work and money lost , my husband loses money !
Waiting around long distances to travel and already feel pants with relapse and stressed ! I thought they are supposed to help ?

In my eyes get us back to our lives as quick as possible , rehabilitated and helped It’s just poor

This is my feelings after seeing a neurologist today . It makes you wonder about serving us When it’s nhs more like serving the huge waged whilst they are always on holiday and waiting times shocking !
I paid to see this neurologist today and what a waist of money and time . Most work on nhs anyway too . Not helpful in the slightest and it’s like those in charge not us ! That’s wrong ! They did nothing I wanted as a patient .

Everything negative
Stem cells – they can kill you 👎 yes but he failed to add they can also help you and have

Guidelines to gp about steroid so less messing Time wasted and stress cause – no can’t do this – but why can other neurologists do this and not him

Lecture on dmds

Also somethings happened at the dentist . I got this relapse after my two amalgams were removed- day after ! So I said it must have something to do with it – he said it must have been the anaesthetic but that can only happen after general . I had local ! So then I said it must have been something else . I said so you think it’s the mercury ! He said oh no couldn’t be that no reports .but … look all over the net and you’ll find reports on mercury amalgams and harmful stories !

And guess what in 1990 everyone who was diagnosed with ms was sent to have their mercury fillings out … so why was that ? If they are safe why was the nhs paying for removal S

Anyway not a happy camper today xx

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9 months ago

As to the quality of service you are receiving, I can’t comment due to the difference in countries, but I do hope your relapse ends promptly.

When it comes to the fillings, there is no reasonable evidence that they cause/aggravate anything ms-related. Circumstantial evidence at best.

Take care,


9 months ago

I disagree about the fillings because I am the evidence !

9 months ago

@rachaellouise , will you sit down and breath slowly. Getting wound up is not helping you.

The NHS is trying to save money, so we have to ask for everything. What we need is not always offered.

The medical profession will only promote treatments/therapies, which have clinical evidence to support their use. So, don’t expect complimentary comments about complementary therapies.

Stem Cell treatment is an awkward one. A double blind clinical trial isn’t really an option, so real data needs to be acquired. Yes, it can kill, but it can also “cure”.

Doctors just cannot recommend untested therapies. If they fail, then they could find themselves being sued. Don’t ya just love the compensation culture!

The jury’s still out regarding amalgam fillings. No clinical evidence again. And, what was considered in 1990, may well not be considered now. What was once considered good for us may in fact be bad, and vice versa.

Look at diesel cars. They were once promoted, with diesel prices lower than petrol. But, now, diesel cars are seen as pariahs, potentially poisoning us!

So, concentrate on what you can do. Work with your local NHS systems/services and, please relax. You are probably making your MS worse. You could well be your own worst enemy.

9 months ago

Unfortunately, you are not a testing subject. Your relapse may or may not be caused by your fillings.
There is nor hard data connected with mercury fillings to support the reasoning. I wish it were that simple – remove the fillings = stabilize/end MS. It doesn’t look that way, unfortunately.

9 months ago

Hello @rachaellouise, you are really not a happy camper! Sorry for your bad experiences, that’s very frustrating. I’m not sure I’ve heard any medical folk I’ve encountered sing the praises of Stem Cell treatment, but only because there is no real data to go on, so I’m sure it will be a long time before neuros are willing to recommend or suggest it. As for the NHS, we can sadly expect a greater dip due to Brexit. But I guess that won’t change the fact that we always need to be our own advocates, us MS Warriors. Regarding amalgam, some dentists have worked for half a century with amalgam with no ill effect, in theory. I actually prefer the feeling of amalgam to that of composite which discolours quickly. This can mean they need replacing more rapidly. Also don’t forget, every time you have a filling replaced, the dentist needs to make the original hole larger, so best to try and avoid. Have a good weekend now that it’s here, and give yourself a big treat x

9 months ago

mercury is a neurotoxin
I didn’t do a clinical trial no but it’s very suspicious the day after and I don’t blame the dentist. I went to great lengths to get a biological / holistic dentist who is in the special body for this and highly recommended . I didn’t just go to my local dentist, I also had to wait months for my removal . I travelled and did loads of research , It wasn’t easy . Also prepared my body daily for this for a year !

9 months ago

Had a conversation with my dental therapist and her assistant who is a dental hygenjest only last Tuesday, asked about amalgam fillings and they told me they are only a problem when THEY ARE PUT IN AND TAKEN. Dental Therapist’s father is a consultant Dentist so I guess she knows what she’s talking about😍

9 months ago

I agree be our own advocates always been that myself and same time advocate of Help and support for one another. !
I mean this is the place to be all in the same boat. ! Ship 🚢

9 months ago

@grandma – what did she say was the problem when put in and taken out ?

9 months ago

@rachaellouise , you are using all your energy to fight “the system” and you’re upping your stress levels whilst doing it. This is really not doing you any good.

Yes, we’re all in the same boat, but we recognise the benefit of calm seas.

Give yourself a break from your crusade and see if you can recover. And well you feel well again, review your strategy.

9 months ago

it can be very frustrating
I think a lot of people feel the same !
Back to myself though I came on here today for support for ms . I understand what your saying about getting upset but we all handle things differently . .. and all have our moments.
I just have to think of myself and will have to think again about what I will do now with regards to my plan of action.

Hope your well though.
Love and Light – that’s better


9 months ago

She said that was the only time you were exposed to the mercury. The person who put them in, even though they did it for a living, they, and their assistant who mixed the filling, show no signs of exposure even after all these years!

9 months ago

@rachaellouise , yes, it is very frustrating. But, you are involved in a major battle to control and manage your MS. You do not need another battle against the establishment. There are too many autonomous people involved.

You’re absolutely right, you have to think of yourself. You’re the important person in all this. So choose the battles where you can have an influence.

And, Namaste back to you. A term used in Yoga, something which could well be of benefit, especially the spiritual side.

Take care.

9 months ago

I also asked my dentist about the two small fillings in my mouth. He also so said that there was no proof of amalgen fillings being toxic. He told me they were getting old but he would leave them where they are for now. I had two aunts with MS and 10 relatives die from ALS so I consider my MS to be genetic. When my mother died of ALS we were told by a research team that her children had a 50% chance of MS or ALS. One of my sisters died last fall from ALS, trying to find the cause is stressing you out. The doctors are just as bad in the US as in England, it takes a year to get a appointment. Stress makes your MS worse, I had a bad relapse last Christmas because of stress taking care of my mother in-law. Let the stress roll off your shoulders. Potter

9 months ago

@stumbler – do you look at the spiritual side ? The soul?

Yes true I have to manage my symptoms With ms but it is also my responsibility to not give up and find answers to my health problems . It’s my responsibility to try…
So I have to do both not just one but not the other .
I can’t have a negative medical team that doesn’t help . It is my responsibility to try and get a positive helpful one who will work with me not against me .


9 months ago

@potter – the dentists all have different opinions !

Mine said their was proof and in the 1990s they sent all ms diagnosed people for removals of them on nhs .
The nhs in the U.K. wouldn’t pay for that unless they had some evidence and linkage with ms. !

Potter it might be genetic but it might not be who knows ?

9 months ago

I believe thats the only time there is a risk of contamination, so you’ve dove the wrong thing by having them removed, sorry😖

9 months ago

Chick if you’re looking for answers, you may never find them and then life is wasted and passes you by. MS is what is is, and yes I know it’s easy to say that when I’m walking around and it’s not affecting me too much. Apart from the days I’m shattered and I can’t rest but I plod on with them. What I’m saying is, whilst we are responsible for taking care of ourselves we also need to be kind to ourselves and live! You’re letting MS win by constantly searching for answers and by doing that you’re forever thinking about it! Smile, breathe and have a glass of 🍷 if that helps but life is more than just about ms 😊!

9 months ago

Hi Raechellouise
after I dealt with dentist twice in my life and a relapse after the first passing out after the second 4 years between each I did tooth filling
the thing they fill was composite
yet aI got a relapse I have a eirs gum it clicks and the tooth filling was in the same side I killed nerves in my teeth I admit
but I thing if they researches pushed them self a little away from where they look now they’ll find a link between teeth area and the nerves system
maybe not
I did local too
but when Implanted my eye I got general general never harmed me
after a year>
when I implanted my cornea again it was local and I got a relapse

there many things they can find

and about neuro care I guess its universal when I was in edinburgh the physio was quite far I had to walk up tight roads
so I never went there more than 3 time
neuro used to see me every year here in saudi every 2 years
and there is no compatible physio
even if there was its so so far
its ridiculous i know exactly how u mean our illness is not just invisible the trusted care is invisible aswell
last time i met a neuro she made me so upset enough to get a relapse in my bladderr i have a bad temper and i kept it in infront of her out of respect she never deserved anything
I accept to be disabled rather than harming my immune system one bit

I asked earlier in this forum idea came to my mind
how can an MS patient remit if the immune system is weak i know the damge has been done by immune system
but it fix slightly what it does afterwards
I say the mistake is in our nerves joint you name it but i look beautiful and MS didnt ruin anything about my general health or looks it has only ruined one part why this one part maybe something in our genes they gotta fix it I dont care personally aint gonna be aids like patients and disableed in the end of my life

i hope things go right for u my friend
stay strong

9 months ago

@rachelouise – chick totes get what you are sayin….

How do u handle havin a shit team?

And help – the removal of the fillings has potentially caused a relapse?

So Hell-bells – give the girl a break!!


She did what she thought was right, based on actual evidence and first hand experience – which is more than some

Eg :
Evolve dentistry:

“Dental amalgams are 50% mercury. The mercury contained in the amalgam leaches out as a vapour into your body for the lifetime of the filling. Mercury is a highly toxic heavy metal and the mental, physical and emotional effects of mercury on the body have been well documented and known for centuries.”

Shall I bother cutting and pasting more?

The problem is that your dental fillings are a direct line to your bloodstream – so once disturbed (by removal for eg) then you have a wee bit of mercury floating round the blood…

Mercury is obviously not as dangerous when it is handled

So Detox, eat good healthy food and drink plenty of fluids to flush it all out mate

You will be feelin much better soon
(you’re damned if u do, damned if you don’t with MS….right? I nearly had mine taken out and my team [email protected] too)

And have some reflexology- you’re a spiritual gal, so am I and had some this week – omg maze balls !!
It apparently helps with dextoxification process.

Money better spent then wasting any more time with a rubbish team, phone the ms society for advice and guidance

And try ldn

Good luck chick
Hugs 🧜‍♀️💕🧜‍♀️

9 months ago


Hi girl !

Lol I handle having a shit team first by maybe get a bit angry then crying then probably have a new plan .haha
I have got a team for nhs so I’m grateful for that but I will search for a compatible neurologist, may take me a while but I will get there ! Who works with me not against me you know in a partnership kind of way

With the teeth
Yeh I did what I thought was best at the time and I didn’t take it lightly, but it happened . It took a lot of courage and now relapse but I don’t blame the dentist .
I still have two more and will be having them out too ‘ mercury in my mouth doesn’t sit well with me ! I’m just trying to recover and detox probably in 6 months .
I have to have them done at two different times .
I would still say to others have them out if they asked me .. better than have them releasing mercury vapour everyday for life or at least 20 years or more . You just can’t gurantee the reaction to them. Some might be fine.

Yeh that’s true damned one way or the other ! I was scared but I did it and had this but hopefully I will recover fully and All will be well

And yes I’m spiritual and also holistic .
I have just gotten introduced to spiritual – soul world – few months ago and I’m loving it unfolding –
Things have been happening to me !
Are you into this world ?

Thanks xxx

9 months ago


How have you been ?

No I know what your saying but I believe I will find my answers if I don’t give up!

I live my life upto all sorts lol but this is a big part of it if I want answers . And the sooner you tackle it the better .

Have you been busy bee 🐝? Out dancing ?

Rachael xx

9 months ago

@nutshell88 – oh how are you ? Lots of blessings my friend 🙏🙏🙏

It’s a common problem with the neuro and others in team by sounds of it !

Do you have a relapse after your dental work ?

I am fiery too your zodiac sign isn’t a fire sign by any chance ? I am Aries XX

9 months ago

I got relapses one 2010 after another
Furst was vertigi was chatting with a fruend on my laptop felt like having a cup of milk once i oppened the firdge the milk fell of my gand and i fell on my knee “ vertigo “ i stayed up all night mum was hugging me on bed couldnt close my eyes i feel im sinking faling with the world rotating around me
Then i went to ER it was 2 am
After i couldnt hold a pen
Or even open a bottle of water or holding a cup handlafter half of my tongue wasnt tasting and it kept switching sides

2015 or 14 in scotland i simoly got up played ps4 since i had MS i became a loser in vidgames
But i actually kicked ass
Was chuffed made me toast and tea
But couldnt continue the food i rested on bed then started to shake and couldnt get up
Called emergency it was sunday and summed they came and said unknown cause of high fever but i felt MS pressure

And yeah I am Aries too 😉

9 months ago

@rachaellouise I’m actually really good at the mo thanks chick 😊. Had an awesome summer, took myself off to Rome, which was bloody amazing!! I think everyone should travel by themselves at least once 😊. Had a chill week and then took the munchkins myself camping, managed to pitch my tent and Gazebo all by myself after driving 4 hours to get there 💪. Was I shattered, god yes but it was all worth it and the kids caught lots of pesky crabs.
Started and finished my new meds, which I’ve been fine with and I’ve signed up to do a degree…haha no dancing over the holidays, mostly drinking 😂😂😂!
I guess I’m the opposite, I’d rather deal with the here and now, but try not to let it consume you.
So other than answers, how you been? X

9 months ago

At @rachaellouise and @nutshell88 I am Aries too! See, us frequent-posting fiery Shift MS Warrior ladies have more than just The Enemy in common! X

9 months ago

Hi @chezy17

Wow sounds like your having a really good time ! What did you get upto in Rome ?

What meds are you taking ? I thought you had to take them everyday . Do you think they have helped you ?
You can’t get more here and now than having ms ? There’s things that can be done now ! Hence what I’m doing . I’d hate to look back and go oh I didn’t try I should have done x y z .
#norregrets is my mantra
I agree with you on the not letting it consume you but we are all guilty of letting things consume us whatever that maybe! I will try 😊
I exercise for example for the ms such as Trevor Wicken! Yoga is for me but it does help the ms too! Do you exercise ?
The neurologist and getting a good team is to help the ms and things run smoothly so life gets better but anything you do at times you do come up against hurdles !

Yes before the relapse I had symptoms but I was doing well . Met loads of new people – have new interests too but it’s not everyone’s bag 💼. Such as crystal healing and sometimes I use them in meditation . I have built up a collection .
I am also interested in the spiritual life .
I ve been to fairs on this which were fun!

Funny how we are all attracted to different things when we get diagnosed !
I’ve Already done a degree when I was in my 20s in hospitality management. Is this your first degree ? The thought of picking a textbook up now is not for me . 😊
my interest / passions lie in nutrition and organic foods now .
Also because of the what I’ve been learning with the ms diet and lifestyle changes . All interlinked.

Take care
Rachael x

9 months ago

@nutshell88 – yes I remember we talked about the Aries star sign

Haha good old Aries and we are rams !
We are the first sign of the zodiac , fiery ! -What date did you say you were born ? Mines the 4th April .

❤️ Love and light 💡 I

Rachael xx

9 months ago

When I was at uni they i got a new ID and they wrote on it 4 mistakingly and so did my passport went to scotland while my passport says 4 4 1988
I knew it was 14 and told them many times they never believed me untill i returned from scotland 😂
So yh i was born on 14

9 months ago

@vixen lol! Wrath of a Aries lol
Warrior r us –
Warrior when it matters
Fellow warriors – same ship !

I love horoscope

Found this :-
Aries Traits
The people born under the Zodiac Sign Aries are curious, energetic, upbeat and enthusiastic personality, who want to initiate and make things happen rather than being mere spectators. The need for excitement push them into new territories and makes them extremely action-oriented.

Positive traits
This is a fairly common trait as far as the Aries are concerned. Not the ones to shy away from taking risks, the Aries at times push their luck just for that adrenalin rush.

When the going gets tough, the Aries get going! No matter how difficult the situation may be, an Aries will take the challenge head on!

Since they always look for excitement and adventurous, the Aries are often the ones who’d try out newer things in life. You may also call them Jack of many trades!

You will never find an Aries low on energy levels. So, when an Aries is around, you will definitely feel the whole environment in the room lightening up.

The positive energy that the Aries possess and spread around not only gives them a psychological advantage over others, but also makes them quite a popular lot in the social circles.

If they are interested in something, be it a relationship or a project, the Aries will be passionately into it and be an inspiration for others.

It reasonates the making things happen bit with me

lol IS this you. ? @vixen @nutshell88

9 months ago


I’m sorry things have been frustrating for you.

I admire your strength and determination which is in clearly in abundance, from I what I take from your posts.

But do not the stress or anger from it all consume you. As stumbler often says, stress is not our friend.

So greatful this site exists . To allow us to channel things out 🙏

Take care

9 months ago

Most definitely! Although, the vigour and excitability is a bit more muted since diagnosis! Negatives are: impulsive, easily bored, easily frustrated, sometimes a bit too vocal, scatty, easily distracted. Could go on, but dont want to remind myself! X

9 months ago

I saw all the main sights chick, got lost in the Italian backstreets, it was amazing 😊. There’s something about not having to answer to anyone, to doing your own thing as when you wanted which made the trip even better 😊. Munchkins had gone away, so I thought rather than sit at home, I’d tixk something off my bucket list 😍.
I’m on Cladribine, one week done, another to do in a couple of weeks and then nothing for a year but I won’t know till my next dose in a year or so 😊. I’m in a good place so probably helps, as for uni, I didn’t go when I was 18, more focused now so probably better to do it now 😊. I’m going to do Arts and Languages and then an open degree.
Whatever works for you, just try not to let it take over 😊.

I’m also a fire sign but I’m a Sagg, explains alot really 😂😂😂.
Take care. x

9 months ago

You guys might have guessed that I’m an Aries too. That adventurous trait has sure got me into trouble! 😕

9 months ago


– that’s well put !! 😊 are you A Aries by the way ?

Thanks for the support that’s all I wanted really .
I am not immune to anger and bad times and it can get overwhelming which doesn’t help the ms . I know something I’m working on like we all are. “How to stay calm in the face of adversity”😊

How are you doing with the ms and life in general ?
Rachael xx

9 months ago

@rachellouise, it sounds as though regardless of the lack of evidence re: amalgam fillings, you’ll do your own thing. Just one thing I can add: don’t ever underplay the effect of MS on any medical (or other) intervention on your body. I’ve had MS for 15 years and can trace its ups and downs pretty much to emotional or physical upsets. I’m quite sure my original, severe relapse was down to the tactlessness of my original neurologist, for example. My take on it is that the MS causes hugely inflated sensitivity within the body. So, a common cold with me now will usually morph into a chest infection. A couple of late nights will deaden my bad leg further. Even slightly too much exercise will knock me out the day after. A mildly cold day will have me shivering. A bad experience with an official or a shop assistant can cause me panic and anxiety for days. My body thermostat is definitely faulty and my emotional responses are exaggerated. I have had to recognise that and make changes to how I live. If I had fillings removed -mercury or otherwise- my body would protest because it does not like any variation from a healthy, calm norm. It might be worth considering if in your present mode of thinking you are giving your body the chance to be calm. i.e winning a battle but losing a war? ….. xx

9 months ago

@stumbler – Aries ! Fire 🔥! – when’s your birthday 🎁?!

@chezy17 – wow 😮 saggitarius ! Always got on really well with your sign ! Fire sign isn’t it !

@londonlad – I forgot to say I am grateful for this site too so we can air out stuff with the ms and anything really !
You mentioned abundance . Do you read books etc on this topic ? It’s sounds familiar ! I read a lot of books 📚 audio too.

Rachael xx

9 months ago

@cameron – yeh my body is imbalanced .

What do you think is my present mode of thinking ?
Just wondering because I want to look at different things whilst still moving forward with the plan to not leave “any stone unturned” in things I deem not good for my health and fixing imbalances in my body
What was your ideas/ mode of thinking to keep moving forward but keep well ?
I don’t want to “stay as I am” that’s no good in my eyes . I want to move forward no stone unturned” whilst being mindful of my health .

I don’t think amalgams should stay in lots of things on net about it ! Just not good having mercury in your mouth ? How can you feel okay about that?
They can’t stay in my view just have to figure out how to remove them with the best possible way for my health .

Rachael x

9 months ago

@rachaellouise , I’m a late March baby, 30th. Born on a Good Friday some time last century!

9 months ago

Im the crab 🦀

9 months ago

@rachellouise – IMO (and I’m not medical so it is just an opinion) there are two things going on. There’s the illness with its ongoing damage to the brain. That is already present and causing you symptoms. You don’t say if you have motor or ‘just’ sensory symptoms, but as we know they are all deeply unpleasant. If you are not taking a DMT, that damage is ongoing. Newest thinking is that MS is progressive from the beginning, i.e. that the so-called relapsing-remitting stage is a useful label under which to ration DMTs but that it is clinically a false definition. Similarly, secondary progressive is not a clearly defined stage, but the expected progression of what was there from the outset. These findings confirm what neuros have long known to be true i.e. that the sooner DMTs are started after diagnosis, the greater their protective effect. All the strategies you are trying are not going to affect the ongoing brain-shredding. I see that you’re not on a drug and am guessing that this is a conscious choice. You’ll therefore be free of possible drug side effects but won’t be influencing the disease course because your brain is unprotected. Secondly, and independently of this, there’s the effect and impact of symptoms on your body. As we know, these can be far-reaching: state of mind (+ all the ramifications of this e.g. depression, anxiety, sleeplessness, mood swings ); physical pain; altered gait; abnormal sensations e.g. tingling…… and the rest. Some, if not all, of these can either be improved or worsened by lifestyle. Being in optimum health, – fit and well in every sense – keeps our overactive MS immune system calm. Then there’s the secondary damage that MS is maybe causing. Hopefully, you’re not affected by this, but for example if you are walking badly, the damage that this causes to your musculo-skeletal system may give you another issue – sciatica, a swollen disc to name a couple! These can be sorted with physio but if untreated can cause as much disability as the MS. So to my mind you are conflating TREATING the illness with DEALING with it. They are separate issues and both need to be tackled. Treatment has to be left to the neuros and if you have a good team they should work with you to find the drug that best suits. Lifestyle is your responsibility alone. No-one can dictate which diet and exercise plan will be optimum. IMO, it doesn’t really matter how or what if it gets you super-fit and healthy while at the same time allowing you to live your life. When I was diagnosed I tried out all kinds of things in the hope that this particular dietary regime/supplement/therapy would deal with the MS. It took me two years to realise that the only thing that really worked was how I lived my life!

9 months ago

PS I’ve just re-read your original post and see how dissatisfied you are with your team. Remember that in England you are entitled to be treated anywhere. If I had stayed with my original neuro 15 years ago I reckon I would be in a wheelchair now. It’s maybe time to get a bit more clued up on current research and thinking (I recommend a daily read of the Barts MS blog) and then reassess if and how your team matches up to this ‘gold standard’. Please don’t think I’m dismissing the importance of complementary therapies (I use several) but the clue is in the name – they are ADDITIONAL .

9 months ago


Thanks for your explanations . Thanks I will keep looking at the barts blog. And measure my team to them lol ( on a side note what do you do if your unhappy , I know you can change but is their anyone you can’t contact regarding this matter )

How far do you travel to get treated in the U.K. ?
That might be something to consider travelling further afield which is what I’m thinking of, shame can’t get the treatment in my local area but that’s what it’s like at the moment .

When you said you tried all sorts when new to ms. Did you try anything regarding the soul/ heart ? And Spiritual stuff?
If you did what was it if you don’t mind me asking or doing things daily regarding this? I try to meditate daily to keep my system calmer so then that might help soul work too
I am also developing a strong faith !
Every time I get something I can get very upset but then I get stronger . Strength etc .
I don’t like going through what I do and don’t think I deserve it but then I suppose if I didn’t go through it all the pain etc then I wouldn’t become stronger.
Thanks 🙏

Rachael x

9 months ago

@cameron I forgot to say I’m sceptical sometimes with the mainstream medicine because they are linked to pharmaceutical companies and might be motivated by them to overplay things and scare others .

A lot of things are in the mind – if they tell you scarey things and you believe I think you get worst . If they tell you positive things you don’t . There has to be something in the mind .
There’s too many unexplained recoveries

9 months ago

@rachaellouise thats so like me but honestly sometimes i push my self too far
Not considering the consequence
And shockingly break my limit of adventure

9 months ago

@rachaellouise, I understand why you’re sceptical about the drug companies, but your time spent wondering if and how and how much is time wasted. Two reasons: however strongly we feel, our opinions will not affect by one iota how capitalism and big business operate. Secondly, you (=we) simply cannot afford to divert focus from dealing with MS. And that’s what you’re doing: everything you are posting tells me you are carrying huge amounts of stress. Your body’s level of the stress hormone cortisol will be far too high, which will be exacerbating your already compromised immune system. Everything will be worse and you may even be CREATING symptoms. I spent two years trying things out – which I know is an expected response to such a devastating diagnosis. Food allergy tests plus sessions with an ‘alternative’ healer and some kind of alternative nutritionist, spinal cerebral therapy (think that’s what it was called), rehab at the PETO Institute (can’t remember the details but I travelled to Birmingham to a centre there), podiatrist, red meat-free eating… and probably stuff I can’t remember! I don’t deny that it’s usually therapeutic to have a one-to-one session with someone who appears interested in your symptoms and is offering help. Perhaps I needed that at the time? I certainly spent serious money but I can’t say any of it made a scrap of difference to the MS. Fortunately, alongside all this I found professionals who did put me on the right track. Number one and most important was my new health team. The nurses and consultant at Queen Square, London told me what to do- basically YOU MUST look after yourself. Stop worrying about MS, start looking after your body. How fit are you? Sleeping enough? Mood? Diet? Over those first two years, that message was consistent and I began to think about fitness in general. That was alongside my great piece of luck, which was to find a neuro physio who analysed my MS damage more or less muscle by muscle. Then I was into finding ways to minimise and compensate for neurological damage. Once you’re into that, you realise a) what you’re up against and b) how best to deal with it. I invested – and continue to invest – money and energy into a weekly hydrotherapy session with a physio. You may be feeling (?) that the MS is all-pervasive, taking over your whole body. A neuro physio showed me exactly what was and what wasn’t affected. When you know that, the way ahead becomes clear. My immediate needs were to stabilise a hip (I’d thought the problem was in my leg!) and to reduce stiffness in one ankle. Two months later, after weekly sessions and daily remedial exercises, my gait changed to become as near normal as it was possible to be . I also needed to build stamina generally – I was shocked at how unfit I’d become. My GP also put me on antidepressants, because of the mental symptoms I had. I must have been bad because the consultant after my diagnosis told me he was more concerned about my mental state than he was about the MS! Like your thoughts on drug companies, my reaction was pretty negative about antidepressants, but (thankfully) the doc was quite firm with me and said I needed them ‘to get me thinking in the right way’. My best advice (which I wish I’d been given and held to!!) is a) make sure your med team is up to speed, then TRUST THEM TO ADVISE YOU ON TREATMENT. b) keep up to date with reputable MS sources, Barts blog definitely and also MS Trust, but not Facebook or Dr Google c) Channel all that negative energy into finding the best (and kindest) ways to live well. Remember that exercise is now being seen as an integral part of a treatment plan. How are you going to tackle this? I swim once or twice a week – between 30 and 50 lengths, and do two or three aqua classes (aerobics, yoga and zumba), always followed by a sauna and pampering with body lotion etc. To relax, I can recommend massage and spa days! I’m afraid I’m not the most spiritual of people: my philosophy is CARPE DIEM -seize the day. xx

9 months ago


I thank you for sharing your story on this . I hope you have managed to find your answers to your health problems

The queens team are good so your lucky
There !

I am not anti drugs and I am intergratative I choose to focus on positive success stories
It’s more about what we put in the body isn’t what it seems – watch living proof by mat embry and you’ll understand what I mean

I definitely think spiritual, the heart and soul may be helpful to you and alll of us ! That’s the connection we have lost

Rachael xx

9 months ago

Yes I’m a fire sign chick, I’m actually alot like my sign, love to travel and very optimistic in general 😊.
Carpe diem is my motto and I actually have a magnet with that on my fridge from Rome! I definately seize the day one day at a time 😊.

9 months ago

@rachaellouise I wathced living proof pretty carefully and there are some important things to call out. I really liked it first off and thought it was a very powerful film. However, Matt was diagnosed many years ago when the only drugs available were much less effective and barely around. Through out the movie there are a number of places where its clearly discussed that there are two parts to the MS process (the inflammatory part and non inflammatory part) Doctors are really focused on the part with inflammation . They are doing a diservice to everyone if they are concluding that is sufficient to take a pill, because meditation, diet, exercise etc really seem to help the non inflammatory part.

Here is a quote from Matt’s dads website (direct ms)
“Although there is no strong evidence the drugs have any significant effect on long term progression, they do have some anti-inflammatory value. Overall an MS drug can be viewed as one more supplement which helps to control the MS disease process. Most of the drugs come with both short term and long term adverse side effects. Each person must decide for themselves if they want to include an MS drug in their arsenal to fight MS.”

It turns out there is evidence even on those early drugs now slowing disability (though not time to SPMS) that wasnt available at the time Matt made that movie:

Sadly we will likely never get good data on long term results. Here in the US a company has 17 years (of which 7 or so are when the drug is in trials) before anyone can copy it. That means that they have 10 years of selling it before others can sell it as well. After that time, they could careless what they find and actually prefer not to even know if something was wrong. So Dr Ebers talks about not being long term data and thats correct, but its not a conspiracy, simple no company has incentive to do it. Its sad the MS foundations, governments and universities are doing more of this testing.

We chose Tecfidera because the active compound has been used in Germany for a long time before it was used for MS.

And since that time the newer drugs like Gilenya and Tecfidera are even more effective.

Another point Matt makes is the full list of possible side effects. However, my wife is taking Tecfidera and while there are lots of possible side effects most of the serious ones are very rare. In addition most of the side effects they can monitor for and you can just stop the medicine and you go back to normal. So that was a calculation we made, is this side effect permanent (bleeding, bloating, pain etc). If you can stop the drug and the side effect goes away and there is a decent chance the medicine helps, we thought it was worth the risk.

Anyway, hope you get some rest and peace.

9 months ago

@californiadreamin – hi long time no speak – hope your well.
I was just wondering about your comment that said theirs a “inflammatory part and a non inflammatory part “
I thought this disease and most others are caused my inflammation. What is the non inflammatory part ?

The neurologist mentioned tecfidera . Is it a pill you take ?
Originally a neurologist mentioned copaxane because I asked what they would start me on if I was to take anything . I’ve read it stops relapse by 30%. Tecfidera by 50% .
Is your wife considering any of the other drugs coming out ?
Has the drug helped her with symptoms of ms or does it just help stop relapses.
What side effects does she get

Also what’s your feelings about the stem cells ? I know theirs the chemo one but have your heard of the mesenchmayl ones that they give you but that don’t wipe out your whole immune system and take adipose cells from your fat and then harvest and put back in ? They might help

Rachael x

9 months ago

@chezy17 ❤️❤️❤️ Good motto !


9 months ago

@rachaellouise there are both components to the disease. DMTs dont really work much on things like SPMS or PPMS right now. The reason is the current drugs are mostly targeting the inflammatory component. As people age relapses slow down but progression continues. So in that film Matt made, much of his concern was where he was going to be long term, regardless of relapses.

Tecfidera is a pill you take twice a day. It is supposed to slow down relapses by about 50%. But there is good reason to think its much more effective then copaxane and that has to do when the drugs came out. It shifts the averaged quite a bit.

For every relapse there are about 10 times as many damaging events going on in the brain. Your brain reserve is limited so “fixing” from a relapse starts to go down as you have more and more relapses. So its important to stop them.

So Matt looks like he is doing great. Given he was diagnosed 20 years ago I think thats fantastic but even he is worried quite a bit about progression still. However, it doesnt seem like he is having relapses in general just some worsening. So if you are having relapses, then its probably good to find some way to knock it down and a DMT might be that thing.

My wife was diagnosed 2 years ago almost (she went numb in Sept 2016). After weeks of wondering, we went to the doctor and they diagnosed her within a few weeks. She had a few other MS symptoms but at this point everything is back to normal. We dont know if its the diet, the tecfidera, exercise, better sleep, other supplements etc. She is a stressful person by nature and I can tell you she tried to meditate and be more calm but not sure how successful that has been.

The main thing she has is some fatigue that happens in the afternoon. When possible she will take a short nap. I think she has likely had the MS for years before she was diagnosed, it was just that the symptoms werent visible. I am pretty sure she had an episode of cog fog, and she has actually had fatigue for years which she has been resorting to caffeine before. The MRI shows she has had it for some amount of time before.

There were 3-4 miserable weeks with Tecfidera (most people dont have it). However, after that she cant even tell if she has taken it. We had a panic in there when she has taken it more then once by accident. We are now more organized so that doesnt happen, but the point is she has nothing noticeable from it.

As far as stem cells, we are tracking both types and are willing to consider either however at the moment I am only convinced HSTC would work for her. Its not to say we wouldnt give mesenchymal a shot if we were desperate (the doctor from living proof matt interviewed isnt far from us). However, still not sure it out weighs the risk. There have been a number of pretty serious problems from it (blindness etc).

One other thing worth mentioning is that when you had your fillings replaced, if there was a lot of swelling, your body can mount an immune response to that inflammation which can lead to a relapse. The body is a complicated thing and it does what it can to protect you.

Take care and wishing you the very best.

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