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got a wee letter

letter came today, said theyve looked at my second scan, and that there are couple of new lesions, confirming multiple sclerosis....also says "the scan did not show active changes after contrast injection was given and this is reassuring however" What does that mean? Can anyone explain what theyre talking about there?

to be honest i was scared after i read it, think i'll have to wait a while before i really know how i feel about this. also if anyones got a spare 8 grand lying about, chuck it my way:P, im seriously thinkin about saving up and getting some stem cell therapy, the fears gettin to me

Hi Raymond, I'm so sorry you've had the confirmation... believe me I know what a shock it is, and more so for you as you are so young.

First things first...  You are not any worse symptom-wise then you were before you got the letter. You know from reading the posts on here, which I know you've been doing for a few weeks, that loads and loads of people live with MS and live perfectly well with it. They work, they get married, they have children, they drive, they go on holidays. Even if they are unable to do some of that stuff, they still manage to live their lives. You might have been hit by a bus and lost your legs, or been in a car accident and had brain damage, or been diagnosed with something terminal. Life does not promise that things will not change. It's a hard lesson to learn but it's the fact of life... one thing you can depend on is change. 

So Raymond you now have to take a big deep breath and start to accept the change that has happened to you. Extremely hard but you can do it. I promise that you can do it. Just give it time. Who are you talking to about this? That's what you need to do. Talk about it, cry, rage, go on and on and on, but let it out.

Now the contrast stuff I'm not too sure about (Rizzo will no doubt give you a good explanation when she gets back from holiday). I think it means that there's not other lesions that didn't show up without contrast. Anyway, whatever... it's obviously a good thing right? It says so in letter.

Stem cell therapy is still in very early stages... and there are lots of bogus doctors out there taking people's money when in fact they are making people worse than they were before. Don't even consider it.. BUT you are very young and all this reseach is now happening very quickly. That means that in a few years there are going to be treatments... it means waiting yes. But just a few years ago new treatments or a cure seemed like an impossible dream. Now it's a reality. They are making HUGE strides and it's only a matter of time. So please don't go and borrow any money and give it to some scamming bast*rd only to be ripped off. 

I hope you have someone to help and support you through this Raymond? It's probably the hardest thing you are going to have to face in your life. But remember, millions of others have faced it and coped and you can do it too. 

Take care, take it one day at a time. Stay strong. 

Pat xxx

yeah i now what youre sayin you make sense, i'm kinda keeping this info till tomorrow coz its ma sisters engagement party tonight and i dont want to effect the good times in any way. i consider these stem cell treatments as a gamble but sometimes i think you need to gamble, ive been looking into it... the only problem i have is money. Part me thinks if i get help quick then i can avoid any permanent damage, i dunno need to think more on it,

Hi Raymond, hope the party went well last night. So have you managed to tell anyone today?

Thinking of you and hope you're doing ok (well I know you're not but hope you at least are getting through the day ok).

Pat xx

Hey Raymond, that was really kind of you to put your sister first.  Apart from that I'm with Pat on the stem cell therapy...I totally understand that you want to be up there at the front of the queue but in the game of life rushing isn't always a good idea....you are young and and in the early stages of the illness, it may not feel like it but there is time to make sure that the treatment you get is tried, tested and the best possible for you...take care, go easy :) Lucy x

yeah i spoke to my sister and my mum today. They are upset about it and my sister seems to be particualy annoyed at the way it went down. She feels that it was a bit insensitive to let me know by letter and is ragin about the fact that the letter was dictated on the 10th of may but never got typed up until the 11th of june, thats a lomg time for a letter to be hanging about. Now they know.... ive also talked about this stem cell debacle with them, and although they will back me, i know they are against it. My mum worries about anythin that goes down outside the nhs. My sister who is a doctor is also worried. 

Despite this i am still going to look into this in more detail. If it doesnt work at least i'll know, and i wont be wonderin about it.

I know there are cases where people have had stem cell treatment and it hasnt worked but does anybody know if there have been negative effects as a result of these unapproved stem cell treatments?

Im not going to rush into it. Although I feel that if i act quickly then i might have a chance of preventing the damage and that the most important thing to me. 

I appreciate the advice given thanks people

I know people will say you can still live a normal life and achieve your goals but the way i feel is if i dont recover to the level i was at before then simply my life is over. That may seem to many people to be an over-reaction but what i mean by that is this life is over and another begins, but i dont want to give up on that life.... i dont want to get another job... i dont want to have to get a plan b because of some disease,i dont want to learn to be something else and accept limitations, at least not until im like 40 or whatever. If i can achive this then i will truly be happy

Hi Raymond,

I'm with Pat on this - she speaks very wise words indeed. 

As you know, MS has mystified the worlds top scientists for years but there is a constant stream of research going on into ms and other neurological and autoimmune conditions so it really is a matter of time before they do strike gold.

Stem cell therapy isn't something they know that much about yet - it's still very much in it's early stages and too many unscrupulous rogues (to put it exceptionally politely) are jumping on the bandwagon making promises they can't necessarily keep, in exchange for vast sums of money which the average person can ill afford. 

A diagnosis of MS is devastating news to receive regardless of what age or what stage you may be at in life and although acceptance doesn't come easily, it doesn't mean giving in to it and it definitely doesn't mean giving up on life either. Your life isn't over - even though right now you think it is. You've just had the carpet swiped out from underneath your feet so it's perfectly natural to be feeling the way that you do. There will come a time though when you'll have got your head round things a bit more and once that happens you'll be able to move in a more forwardly direction. Some have likened it to a grieving process, which I guess up to a point, it is.

None of us want to be struck down with illness or injury but generally speaking it's rarely something that we have much control over either so the only thing we can do is to go with it and learn to manage our symptoms as best as we can whilst getting as much out of life as possible. 

I'm still in the same job that I was prior to being diagnosed - it's not easy and yes I have had to make some changes to the way I do things but I refuse to chuck in the towel. I still live a decent life despite the struggles because that's what we do when we're dealt a dodgy set of cards.

You've had a major jolt to the system and your world's been rocked so go easy on yourself and for now take each day as it comes but whatever else happens don't lose the fight that's in you and never give up on your ambitions and dreams because they're do-able!

Remember where we are - as the saying goes 'we're in it togevva'.

Debbie xx

 

 

 

  

  

Hi again Raymond, very glad you have told your family. I agree with your sister... I have never actually heard of anyone getting the dx confirmation in a letter, and terrible that it didn't get sent out for a month! I think you should probably make a complaint to the hospital (though this is probably the last thing you want to bother with).

Did they say anything to you about what type of MS they think you have (sorry you may have told me this before)? When is your next neuro appointment? 

Interesting that your sister is a doctor (I assume a GP?). Do you think she would be willing to do a bit of research for you on stem cell therapy? She has the medical knowledge to understand the treatment better and the pros and cons. I think if you are determined to go ahead with this, you need a cool-headed person with medical knowledge to look into it.

For now try and keep the 'one day at a time' mantra going. Nothing is going to change overnight so try and stand back a bit and give yourself some breathing space.

Thinking of you,

Pat xx

Sorry to hear of your dx and I agree with the others that it was a terrible way to find out. You should contact PALS for advice on that.

I have to admit that when I saw the title I thought you had an appointment at the continence clinic place!!.. Sorry

haha no nikki not yet i am glad to say. Yeah it was quite a sh*t way to find out but im not too bothered, more annoyed about the length of time it took. She never did say in the letter what type of MS it is but im goin to get an appointment soon hopefully. 

Ive said to my sister about it so i think she will defo look into the stem cell research and wiegh up the options. I think even if theres some chance of it working then it may be the way to go, and i know it not a sure thing and nobody can say what will happen but i see this as possibly a risk worth taking. id be very interested in talking to this person andrew white, or anybody thats had first hand experience.