Help From Spain!!!

Hi everyone!
(first of all, sorry if I commit some mistake using English)

I’m Sergio, 29 years old, and I’m just diagnosed with MS,

Last year felt quite painful eyes, in the summer 2020, and it faded away some months later…

I’ve been fine autumn and winter, but in April I started to notice numbness on my feet and legs (hormigueo in Spanish, hormiga is ant in Spanish so hormigueo is like the feeling of hormigas ‘ants’ running under skin)

So I made a MRI, and I was diagnosed with Ms.

As you all can understand, feel devastated, and neurologist talked to me about taking medication.

Well, I have read a lot of information about MS and its treatments and found out there is a treatment called HSTC, which is not done in Spain if you are not truly in bad condition… (I met a boy in north of Spain (Santander) and he had that treatment and has been in remission with no more lessions for 8 years since it was made, in 2013.)

Well, my question to ‘veterans’ in MS, is,

Treatments for MS (medicaments) really stop progression and relapses of the disease, or just slow down progession??

If only slow down progression I would consider HSTC.

Neurologist said to me 'Don’t worry MS is not what it was 20 years ago, now it can be under control and it can be stabilized with the treatments we have nowadays)

So… Can you give me any advice? Experience? I think people suffering illness tend to know MUCH more about an illness they suffer, than doctors who studied but they don’t have the illness.

Sorry for the long message.

Besos desde Barcelona!! Kisses to all you from Barcelona!!

Hugs and stay strong!

I love this! That’s exactly how it feels, and I’ve never been able to get people to understand what I mean. (And your English is just fine!)

I am sorry for your diagnosis, but it really sounds like you have a good neurologist. I would lean towards one of the more recently-created drugs as opposed to the ones that have been around for a while. People who have been taking the newer ones seem to be getting very good results.

I think the response to drug treatments varies as much as MS itself. One person will have excellent results with this drug, but it doesn’t do a thing for the next person. I would go with one of the more recent drugs created (within the last 5-10 years) as opposed to the older ones.

I’m old-school enough that I question the HSTC. It seems to still be in the experimental stage, although I know there are others on this forum who are considering it. I’m not sure it’s even available in the US.

Your neurologist should be offering you a variety of treatment options and explaining the pros and cons of all of them. Don’t make any quick decisions. Learn what you can about all of them and then go from there.

1 Like

Hey Sergio greetings from South America i do talk and read in english too. Here it goes my answer to 1 of your questions given:

Treatments for MS (medicaments) really stop progression and relapses of the disease, or just slow down progession??

Answer: As i have known…there are medications wich slow down the progression. You should consider to use the HSTC if medication it is not effective slowing down the disease. The neurologist it is right…it is not what it was 20 years ago like the doctors told me too.

Hugs from Santa Cruz de la Sierra.

First of all thanks for your answer!!!

I’m really worried about the progression of illness, but you are right.

I know cases of people who have treatment and after 15 years they are pretty well…

But also I know people who in the period of 2 years after diagnosis are really ‘bad’

So it’s just the uncertainty, you know what I mean for sure.

There is such a huge difference among all the cases I have read about…

How long have you been with the illness? Are you OK? I need positive cases… As I am really scared. Which treatment are you having?

Are newly diagnosed different from ‘old diagnosed’ as we have more ‘guns’?

Again, thanks for your answer.

And, by the way I suppose your daughter’s name is Nora :slight_smile: that’s the name of my cat!!! Although in Spain there are women whose name is Nora as well.

Xxx

My daughter will love this! I can never remember the name of her cat, so I just call it “Fluffy”. It’s actually her middle name, but we named her after my great-grandmother.

I think I’m a positive case. I’ve had RRMS for at least 40 years now but wasn’t diagnosed until late 2019. I had my first undeniable symptoms around age 15, but I believe it started a few years before that. No one would take me seriously way back when, and there weren’t any treatments anyway. I just lived my life as best I could, in and around the relapses, and treated the symptoms with common sense things like hot water bottles and painkillers from the grocery store.

We’d been thinking it was MS for at least 20 years, but I was without health insurance for much of that time and had given up on ever getting a diagnosis. I only pushed a couple years ago because I had a very bad relapse that wasn’t going away.

Anyway, I worked full time at fairly active jobs for about 32 years, then I switched to part time for the last few. I went to trade school, married, had children. My life has been very normal except that I had to give up hiking in my teens and have had to limit my heat exposure, particularly in the summer, since my early 20’s.

I live a quiet life now on government disability payments, but I’m still in my own home and take care of things myself, including the yard work. I have to take frequent rests, but I’m having the time of my life! I finally have the chance to indulge in my sedentary hobbies and just play all day!

And the newly-diagnosed ARE much better off. The drug treatments seem to work wonders for most people. Find out which kind of MS you have, and then you’ll have a better idea of what the future might bring. And then, just LIVE. With any luck, new issues will arrive slowly, and you’ll just adapt to them as another part of your daily routine.

Your story sounds a story made for cinema!!

40 years having MS!!

Really encouraging to read you.

I have remitting relapsing MS by the way.

I’m gonna try some new drug, and hope it controls enough progression and relapses…

I am glad you are now having the time of your life :slight_smile: don’t know you but really really happy for you, you can be sure.

Sorry for keeping asking you :slight_smile:

From your knowledge nowadays is the majority of people newly diagnosed with Ms living normal lifes? I mean people under treatment.

Thanks a lot. So Much love from. Spain

I’d have to say “yes”, but the only ones I really know are here in the online forums. If you have to have MS, Relapsing Remitting is the best one to have. It’s different for everyone, but you really could go years without having too many issues.

I occasionally deal with eye pain or blurred vision, but I’ve never had actual Optical Neuritis. I get stiff and sore at times, but there’s rarely any real pain, and I can always deal with it using those over-the-counter hot-and-cold creams. With me, it’s mostly that my strength and stamina have gone away, but that didn’t even occur until 2015, when I had what they diagnosed as a bunch of mini strokes with no known cause. Prior to that, I’d just be more tired than most at the end of the work day or when being unusually active on weekends.

I think that once you settle in with your diagnosis and a treatment plan, you’ll find that your life really hasn’t changed a lot, and as time goes on any changes will be very gradual.

Most of the people on here who are in wheelchairs or on Disability are older and began dealing with all of this before the days of practical treatments. And we still get around and have active lives! Look up Crazy Chick, Mogace (Mick), and Janhhh.

Maybe the worst symptom I have had is this dizziness which comes and goes many days…

… Do you have it?

You are so funny :slight_smile:

I have in the past, not so much now. It seems to come in spurts. Back in 2007, I went through a couple weeks of double vision and terrifying head rushes, then in early 2019 I had very mild double vision that would only last a few seconds several times a day.

Now I just get blurred vision if I’m overtired, but very rarely is there any dizziness.

I’m glad I can make you laugh! We have too many depressing days, so I try to find joy wherever I can.

In the early days, I’d have trouble upon getting out of bed or standing up, so I’ve just learned to do it slowly. That seems to have made a difference with the dizziness. No quick movements from one position to another.

Thanks a lot for your answers!

Im gonna try to explain my dizziness though I don’t know if I will be able of doing that in English…

Mmm… My dizzinnes is like a slight movement in my head…

Like having had 2 cups of wine… Is not vertigo… Is less strong than that.

It comes and goes through the day…

And it is not visible for people looking at me. I mean, you look at me and don’t know I’m dizzy at that moment… I don’t lose balance.

Is the same dizziness?? Hope it has an end… Is very irritating :’(

Yep. Exactly that most of the time. Great description! With any luck, yours will go away in a while.

Hello Sergio

I’ve just come across your thread. I wanted to comment from some of what you said in your first post and then one of your more recent ones.

Initially you’d asked about medication and it’s effect on progression. The disease modifying drugs (DMDs) that are prescribed for relapsing remitting MS are designed to reduce the number and severity of relapses. This then will reduce the lesions you have and also the resulting disability. They don’t have any direct effect on disease progression.

So if you’re on a good DMD with high relapse reductio potential, chances are you’ll be mostly relapse free for many years to come. This is proven whereas HSCT is not. I know many people have had fabulous results from HSCT, but it costs a great deal and some people get very limited benefits.

I know you’re in Spain so there’s a difference in which drugs are prescribed, but if you have a look at MS Decisions aid | MS Trust you’ll perhaps get an idea of the possible drugs. I realise that prescribing guidelines are different, and the drugs probably have different names too, but it may give you an idea.
My second thought was about your dizziness. I think it could still be a kind of vertigo. Vertigo often presents as dizziness when you move your head. I used to get it sometimes just driving round a roundabout (is it called ‘rotunda’ in Spanish?) I would feel dizzy and unsafe. Also when I stood up suddenly or just move my head. Have a look at: Dizziness (vertigo) | MS Trust Vertigo is explained there in a way that soundssimilar to what you’re experiencing. This can be caused by MS relapse, which means it should improve over time.

There are also exercises that can help. If you have a physiotherapist, they may be able to help.

Sue

Hello Sueeeeee!!!

:slight_smile:

Thanks for your answer which is really appreciated.

Umm, well, the names of drugs in Spain are exactly the same as in UK.

Tysabri, Avonex, Interferón, Aubagio… They all are the same. We have a public health system which provides us the drugs with no cost, the same situation you have with NHS.

Its an universal system of health care, anyone coming to Spain if has some problem, will be accepted in hospital with no costs…

“rotunda” as you said, jeje which is the same ‘hehe’ in English… I think you mean ‘rotonda’ which is the circle which cars surround in cities, roundabout maybe? Jeje

As you said DMDs have no direct impact on progression, although progression may be in cases very very slow (my ms seems not to be very aggressive as in the period of a whole year, I did have optic neuritis, not very strong, and tingle and numbness and a little bit dizzy from April…)

But what makes me feel very upset is the fact I know a boy from North Spain (Santander) who was given HSCT treatment in Spain because of he was having a rapid progression, from that treatment its been 8 YEARS with mris showing no progress… And he tells me the progression stopped and he is not taking medicine, only for neurology pains which remained from period before the HSTC.

Sorry for telling you my life jeje, but my father has money enough to give the money I need to have HSCT in Mexico…

But he told me: ‘only if neurologist recommend it’ so I’m a little bit ungry…

He, like my mother don’t trust in countries like Mexico, Russia… You know??

For them the best option is Spain… And in case it’s made outside Spain, it will be better having it in countries like France, UK, Germany… (as they sound first world…)

Also I have known a girl from Barcelona who had this treatment in 90’s and had no relapses from that date…

I don’t know… I think the sooner I hit this shit, the better.

Why is HSCT still in experimental trials!!???

I envy you as in UK is a procedure made if you accomplish criteria…

I told my parents about that… And I’ll talk to my neuro about that…

Anyway… I will have a drug from start but hoping to have HSCT treatment made next year…

Sue, I have seen you are an EXPERT (at least for me) with drugs, will I have many good years to come? :’(

I’m a boy, with a boyfriend and our life has been stopped by this shit.

Love for u all. Hoping ur answer. And sorry for long message.

Forgot to say… Maybe it will make you laugh…

God saaaaave the queen!!! Jajaja

I LOVE your national anthem!!

Think your Queen, Harry Potter, Lady D and football… Are the symbols for us when thinking about UK jejeje…

Also, London and Brexit…

Hope for your answers and hope this message is taken with humour.

Hey Sergio

I kind of assumed you were male, given your name. Although I’d better watch it, making male/female distinctions is getting people into trouble here. Even St JK Rowling!! Jeje! :grin:

I think in the UK it’s rare to get HSCT. Mostly people have gone abroad. I totally understand your wanting a cure, not symptom control. But I also understand your parents perspective. They feel comfortable with the healthcare in Spain, or at least in Europe, with healthcare they trust (a bit maybe!). It’s probably not about the money at all, if you could get it free in Russia, Mexico, India, etc, they’d be reluctant to encourage you to go.

In any case, as the neurologists in Spain don’t believe in HSCT, it’s going to be tough going.

I remember when Lemtrada was first talked about (it was about 2003 when it was called Campath) I would have done anything to get it and get rid of MS. It seemed then to be a cure - there was nothing that came close to it. It took years before it was widely available and that was too late for me. But I do understand your frustration.

Personally I must say with the exception of Harry Potter, I’m not a big fan of your examples of ‘Britishness’. I’m surprised you didn’t say ‘cups of tea’ though! (As for Brexit?!! We are clearly a nation of idiots!)

Don’t take me for a complete expert on drugs or MS generally. I’m not. Use the doctors and nurses you have and verifiable, reliable sources of information. I’m just a person with MS, like any other on here.

Sue

Hi Sue!!

Yes, cup of tea is another symbol, as it is Big Ben etc jaja or London Eye.

I’ve read your message and I can feel you really understand me…

As I suppose, you are a person who has fought for a long long period against Ms.

How is your life?? As new diagnosed think future is gonna be hell… You for sure understand what I mean.

How long have u been with disease?

Thanks in advance you are very kind to me.

And for sure, it’s gonna be tough with neurologists here as they don’t believe in hstc but… I’m gonna try hard even if my father does not want to give me that chance (obviously he has fear)

I only want to spend 15 years maybe? With my boyfriend with little disability… I’m 29…its so so hard I even thought about suicide (which I have forgotten) I contemplated suicide as a way of escaping from myself… The eternal cure…

But my insctic tells me to keep fighting…

I’m sorry to be repetitive, but the case of that Boy in Spain having HSTC keeps me wanting that treatment…

It’s gonna be very hard to say, but Id die happy trying the strongest gun I think it is hstc.

By the way, I studied English philology and William Shakespeare and John Milton are the true symbols for me…

Love ‘lost paradise’ from Milton.

Or ‘The Canterbury tales’…

Hugs and kisses from Spain. Abrazos y besos desde España.

Hello again Sergio

You are a clever boy aren’t you? Your English is fabulous and to have studied the hard parts of English Literature (ie Chaucer & Milton) is beyond the capabilities of many of us Brits.

As for me, I’ve had MS for 24 years. To start with, like Mick/Mike/Michel there were no DMDs so was left to get on with it, knowing nothing about MS and just having mainly small, mild relapses and ongoing problems like on and off spasms (that I didn’t know were spasms!)

Because my body is a bit of a baby, it can’t handle a lot of drugs, so have been mostly modifying drug free. I’m now aged 54 and after having several nasty relapses, I use a wheelchair full time. I added to my disability 18 months ago by having a fall and breaking my femur badly. (Biggest bone in the body and the worst possible place to break it - fixed by a huge plate from hip to knee and pins through both!)

So now I’m classed as Relapsing Progressive - basically Advanced MS, I won’t get any better and probably will get worse. But I very fortunately have a pretty fabulous husband who looks after me!!

Now, as to you and HSCT, I was thinking about this. You seem very set on it. And why not, you’re young and fit, you have a pretty good life and you want to keep things that way. So I do understand wanting to put the brakes on MS and say ‘stop, I wanna get off this train’! HSCT does look good in terms of ultimate benefits. For most people that is. Unfortunately it also comes complete with some very scary risks to balance out the potential benefits.

And then there’s that big problem, it’s not available in Spain. It’s not even fully available in the U.K., or in most of Europe (maybe all of Europe - how would I know, we’re stupid enough to have left the Union :eu:!) Plus that other big problem, the places it is available are scary in their own right - Mexico and Russia. And then there’s the cost.

So in your position there are several things I’d do. The first is to do all the research possible. I’d start here: https://mstrust.org. uk/a-z/stem-cells-and-ms-ahsct Obviously the MS Trust is a UK organisation, but their fact sheets are great. Pay particular attention to the risks (including death!). There’s also things like future infertility - I don’t know if you’d thought of having children in the future, you and your boyfriend may be nowhere near to thoughts like that (I have no idea of the logistics in Spain). There is also the fact that being on an extreme immunosuppressive therapy might be too risky, especially in a world with Covid in it. Don’t forget that Mexico (which is surely more attractive to you than Russia) has incredibly high Covid stats.

I’d also be doing pretty much what I’m sure you’ve been doing already and Googling like crazy. In this case, I wouldn’t say don’t Google the subject (unusually), just try to get accurate information. In the U.K., there’s the Barts Blog: Debating a UK game of chicken – The MS-Blog Then there’s this site. Be careful of the clinics offering HSCT abroad. Don’t forget they are in business to sell you expensive treatment.

You could also look on other MS Forums, such as All the latest on Shift.ms On that site, do a search on HSCT, there are lots of first person thoughts and experiences. Equally, there are many other experiences on the internet generally, on YouTube for example. Just remember nothing you read on the internet is necessarily true.

What I’d then do with all the information you collect is to weigh up the pros and cons. Try to keep an open mind about the procedure. Then start talking about it, to your friends, siblings (if you have any), your boyfriend/partner and ask your doctor what s/he thinks of it. Don’t just ask for a referral, ask for opinions on the benefits for someone in your situation.

If in the end you are still completely convinced that you want to do it, think about how. That’s the point where you try to find out if there is anyway you can get it funded by the state. Failing that, talk to your parents about it (I suggest you’d probably want to do that even if you had it paid for by the government!).

If you are asking them to fund it, try to put together a business case for them. By this I mean lay out all the facts, the possible benefits and the risks. Put it to them that you’d be asking for an investment in your future., in much the same way as they’ve probably already had to invest in your education.

In the end, if you change your mind about it bearing in mind all the facts, or if you cannot get it funded, think about what else you can do to protect your health. Consider all the DMD options. I assume in the short term at least you’d start taking a good disease modifying drug anyway. Think about Lemtrada (if that’s available to you), or Ocrevus, or Tysabri. These are all excellent drugs and you could find that Lemtrada, for example, puts the brakes on MS as well (maybe better) as HSCT.

I hope all of this gets you thinking and working out the very best way to beat MS.

Sue

It’s just amazing how kind you were to me…

You took so much time to respond me, so please let me tell you thank YOU from my heart…

Of course my boyfriend and me are not concerned about infertility, we try and try but neither him nor me get pregnant, in spite of our efforts Jaja (I’m sure you laughing)

I consider you not only an intelligent person but also a good person, excuse me for Spanish expression (una chica de puta madre) which means a gooood good person :slight_smile:

I’ve been reading a lot of information, especially scientific studies in pdf posted on internet, I saw neurologists in YouTube, and also try to find out the type of chemo is being used in HSCT as it can change the final result.

By telling you this, I wanna say that I’ve been researching many nights many hours… And yes, I wanna try, know the risk of death… Although is small when the treatment is done under good hands…

Life is one (although I DO believe this is not the end… Jeje as I think we reborn many times… Or there are more realities out there…) jaja after talking about other crazy topics for some people…

Well, it’s risky I know, but the risks of MS through time are so so hard for me… DMDs also have many side effects so… You know? Life is risk…

Would you consider having hstc if you could?? Sue

And… Sue, believe me or not, you touched my heart although there are so much distance between us… You really took your time to help me. Hope life you can pay you with many good moments.

Te quiero!!! Love u!

I will check out the link you put on another thread.