What Do I Do Next

[danlexboo]

So what is next?????

 

I have had the MRI scans, and they were positive. So I accept I am diagnosed and now it is time to find out how to get on!!

 

I have a Lumbar Puncture so now we are confirmed as MS positive and upon further investigation it looks like my MS is the progressive type rather than the "episode" type. I think OK, not necessarily as easy to manage medically (apparently), and maybe not the best diagnosis in the world, but well, never mind it may take years to really effect things yet!!

 

Now, I have to have MS sight tests (evoked potentials) at the John Radcliffe to see if when I went blind in one eye for a year or so was it really a CSR (doctor speak!!!) or actually more visual disturbance through MS. Certainly the more tired I get the more my eyesight falls away. If I have to explain this to the DVLA and my car insurance they will think they are having an early Christmas as this is the type of excuse they are looking for!!!!

 

Sorry to rant, I am feeling sorry for myself and this time Chocolate is not helping, nor are G&T's!!!!!!

How much do we all have to put up with? The black hole is getting deeper and I am falling further into it. I know my wife tries to help me and stays really positive, but how much more hassle and how many more knock backs? As this is only the start of my journey how much worse is it going to get??

[Shirl]

Hello James, I am so sorry your MS news is making you feel low and frustrated about the future. I hope you won't think I am being trite or patronising but everyone of us goes through this at one time or another.

 

For some, it is when they are diagnosed; for others, it is a particular symptom that distresses most; others will sail along merrily and suddenly hit a depression that has no apparent cause other than MS. We are all different.

 

I am sure that the questions you ask are you thinking out aloud, not really expecting any of us to be able to answer you, because we can't. The point is, everyone on Earth has no idea what tomorrow may bring in terms of health. For us, the certainty is that we will always wake up with MS and I'd be lying if I said it is not always on my mind. But the difficulties get easier with practice.

 

For now, I would advise you to take one day at a time, set yourself small goals to increase a sense of achievement and not to be afraid to use your GP's services again and again until you feel comfortable with your symptoms. Or at ease with yourself.

[Lindyloo]

Hi James

 

really sorry to hear you're having a rough time at the moment but try not to think too far ahead. remember you are still coming to terms with all of this and it can be a lot to take in in one go. Try to take each day(and symptom) as it arrives and sooner or later you will learn to recognise each symptom and know how to deal with it.

 

You have come to the right place for advice and to be able to have a rant! Everybody here is so helpful and friendly as i have found to my benefit in the past, but it is also a happy place and we all have good craic from time to time. So never apologise for getting things off your chest........a problem shared is a problem halved

 

Just remember you are just starting out on your MS journey but also remember you are by no means travelling alone. we'll be with you every step of the way!

 

 

Take care and i'm sure some of the others will be along shortly

 

 

 

Lindyloo

[Hezza]

Hi Daniel,

It's totally understandable that you're feeling this way. With a few tests and a diagnosis it may seem that all you had planned for your future is now in doubt. Shirl is right in her advice to take it a day at a time - with MS that really is key.

 

In time you will come to understand your symptoms and how best to manage them. Try not to panic about the DVLA and insurers - they do actually prefer to keep people on the road though their own internal process issues can male it take a long time for them to get back to you which adds to the frustration of it all.

 

Remember the important thing - you are still you and the MS can't change that. You may have to find new creative ways of doing things but underneath all the symptoms Daniel is still there.

 

We're here when you need us

[danlexboo]

To All

 

You are so right, and so much my friends, today is a new day. Is this the start of a new life accepting the issues and getting on with them.

 

8 Weeks ago (something like that!!) all I knew was I felt yuk and tired a lot. The GP said it was depression so I just got on and put up. Now I can call the thing MS, wow, what an excuse!!! Or am I just acting like a lot of us do/did.

 

It is time to pick the "ball" back up, get going and enjoy the challenges of life again. Actually who really cares, if it all falls down I can just blame the MS and start again. But if I do not try how do I ever know??

 

So, here is the promise, I may be down at times, I may rant, but I promise no more wallowing on and on. A few hours, maybe a day but not a month, or more!!!!

 

Everyone here has made me realise this, and for that I am so greatful. Add me to the "how can we help" pot and count me in for help that needs advice. There is a lot worse out there than MS so now is the time to realise this, thank my stars and seize this new perspective I have been given.

 

When I take my 11 year old to football matches (and he is the goalie so is seen as the last man standing!!) he sits in the car with me asking the opposition to "bring it on" and that he is going to "whoop their a**ses", he is right - now it is my turn too, he has shown this and everyone here has reminded me - thank you so much.

[Heste]

Hi James,

We have a lot in common, except my glass is half full while yours appears to be half empty.

 

I too have PPMS. Personally I prefer it to RRMS as it means I don't have to take medicine every day or inject myself. I know that tomorrow I will have the same symptoms as I have today. It's consistent, I think this makes it far easier to manage.

 

There are plenty of positive things about a PPMS DX. Here are just a few from my experience:

 

1. Its not cancer. or any of a long list of other potentially fatal, life shortening DXes that you could have had. PPMS does not have a course along which you are bound to travel. It might just as well stay the same as it is now for as long as you live. It wont kill you. Just getting a DX is better than the life of limbo so many of our members are in.

 

2. To manage fatigue I have made a space in my life. Without a DX people constantly fill their lives with stuff. One of the worse culprits is "work". We barely have time to live. A DX of PPMS make you look at all the "stuff" and ditch as much as you need to make a little space for yourself. I now only commute to London three days a week. On the other two days I work from home but apart from not commuting so much I spend more time with my wife, dogs and cats.

 

3. I get pain in my legs when I walk. I don't know if you have this too. It slows me down, it wears me out, it entitles me to DLA (higher mobility allowance), it gives me a free car every three years. It gives me a Blue Badge so I can park almost anywhere.

 

4. I have bladder problems. I don't know if you have this too. If you don't then there is another positive. Because of this little problem I really can't travel by train anymore (the toilets are often out of order and that's too risky) so now I commute by car (free car) and park in the director's car park under my office. My company is good but really have very little option but to make these 'reasonable adjustments'.

 

5. I am free from all heavy work. OK some of this heavy work I have passed on to my poor wife. Cat litter bags weigh 20Kg which she now has to lug down to the cat house or carry upstairs. In the office no one ever asks me to give them a hand shifting computers or boxes of books or papers.

 

6. Having PPMS is a lot like being fabulously wealthy in that you don't have to work so hard and it opens doors for you (literally). People step aside to make way for me. At the office people come to me rather than ask me to go to them.

I get a private executive bathroom that is bigger and cleaner than my co-worker facilities (OK it's the disabled loo, but the effect is just the same)

 

7. I get free light bulbs. Yeah, I know. I don't understand this one either. Motability have sent me six now, and a power saving plug that turns off my printer and monitor when my PC is powered down. For some very good reason Motability think I need to save the planet.

 

8. We get discounts and privileges in many places. For example, the London Eye. I would not need to queue for half an hour and I pay a few quid less. why? I don't know. It's just their rules. OK I couldn't stand in a queue for that long, but why it should cost me less I don't understand. If I was blind it might make sense to discount the ride but I would appreciate the view as much as any full paying visitor. Just our privilege I guess.

 

9. I walk with a stick. It seemed daunting at first, but it was that or falling over. But what a difference it makes. Suddenly people give way to me. Shop staff are quick to carry things to the car for me. You know, I could become extremely lazy but people always want to do things for me. I have another view of this, it's a Buddhist thing. The people who I allow to do things for me, to hold open doors for me, to fetch and carry for me, also get something out of this. These people then feel good about themselves for what they did. I like to think I am creating opportunities for people to feel good about themselves.

 

10. I get to chat to people on this forum. Without MS I would be writing on Equestrian forums that are full of people nearly as self obsessed as me. My horses' entire lives are documented on equestrian forums. But here we talk about each other. We support each other and generally prop each other up. Good isn't it?

 

Now if you can't think of 10 positive things that MS has done for you then you really are not trying. Yes it would be nice if we didn't have MS but we do, so we must make the best of it.

 

Next we get on to the DVLA. Don't worry about them. If you feel you are OK to drive then chances are so will they. I have three year driving license. In 2009 they will ask my Neuro and Dr if I am OK and then give me another three year license.

If my insurance company even thinks about increasing my premium due to MS then I tear their arms off and beat them with the soggy ends. They cannot do that. That's discrimination.

 

MSers are covered by the Disability Discrimination Act ( DDA). Nobody can step onme without feeling the sting of that little firework.

 

Regards,

 

John

[linds]

Hi James

We walk the walk together on this forum. Take care, Linds

[Gaynor]

Glad to hear you're sounding a wee bit more positive now.

You get up days, you get down days..........just ride the rollercoaster and as my friend always says to me "just take one day at a time". She is right too as thinking too far ahead and summising about all the 'what if's' isn't a good thing to do.

 

We're right with ya

[mayb]

John as usual you have said it all and I hope helped us all a bit with that post. I am seeing a neuro on Thursday for my LP results and praying so hard for a diagnosis that I am sure some would consider me mad. However, for all the reasons you give here such a diagnosis is better than the worry of something worse. You know something is badly wrong and you need to be given a name for it so you can continue with your life and adjust to the new way of living it. I am sure that you have been through that bit daniel and I think you may come to feel the same as we do. Should I receive this I am expecting to be quite upset and I am sure I shall be negative about an ms diagnosis at times as well - it is only natural. However, it would liberate me from years of wondering and all of that testing and in the end I shall be glad of it I know.

 

I was glad to read your new post about the way you will be aproaching this diagnosis now and I will remember it too on Thursday if necessary - please don't be hard on yourself for feeling the way you have done and don't expect never to go there again. This forum is just what that is all about - we see each other through the bad times and share the good.

[linds]

Hey Mary You are doing Thurs for both of us!! Lindsxxxxx (you know what I mean)

[mayb]

I know what you mean linds I just hope we are both 'happy' with the result!! Whatever it is we have to remember it doesn't change us in any way or the way we live our lives. If there is no diagnosis I will just have to remember that.

[Lindyloo]

Whos Daniel???? he he he

 

 

John as usual spot on with the advice.... You should be a motivational therapist!!!

i love to read your posts... so inspiring for James and us all...

 

[Michelle]

Ref lightbulbs, we too have loads of them. They just keep being delivered. We have enough to keep us going for years and years

[danlexboo]

Hi James,

We have a lot in common, except my glass is half full while yours appears to be half empty.

 

I too have PPMS. Personally I prefer it to RRMS as it means I don't have to take medicine every day or inject myself. I know that tomorrow I will have the same symptoms as I have today. It's consistent, I think this makes it far easier to manage.

 

There are plenty of positive things about a PPMS DX. Here are just a few from my experience:

 

1. Its not cancer. or any of a long list of other potentially fatal, life shortening DXes that you could have had. PPMS does not have a course along which you are bound to travel. It might just as well stay the same as it is now for as long as you live. It wont kill you. Just getting a DX is better than the life of limbo so many of our members are in.

 

2. To manage fatigue I have made a space in my life. Without a DX people constantly fill their lives with stuff. One of the worse culprits is "work". We barely have time to live. A DX of PPMS make you look at all the "stuff" and ditch as much as you need to make a little space for yourself. I now only commute to London three days a week. On the other two days I work from home but apart from not commuting so much I spend more time with my wife, dogs and cats.

 

3. I get pain in my legs when I walk. I don't know if you have this too. It slows me down, it wears me out, it entitles me to DLA (higher mobility allowance), it gives me a free car every three years. It gives me a Blue Badge so I can park almost anywhere.

 

4. I have bladder problems. I don't know if you have this too. If you don't then there is another positive. Because of this little problem I really can't travel by train anymore (the toilets are often out of order and that's too risky) so now I commute by car (free car) and park in the director's car park under my office. My company is good but really have very little option but to make these 'reasonable adjustments'.

 

5. I am free from all heavy work. OK some of this heavy work I have passed on to my poor wife. Cat litter bags weigh 20Kg which she now has to lug down to the cat house or carry upstairs. In the office no one ever asks me to give them a hand shifting computers or boxes of books or papers.

 

6. Having PPMS is a lot like being fabulously wealthy in that you don't have to work so hard and it opens doors for you (literally). People step aside to make way for me. At the office people come to me rather than ask me to go to them.

I get a private executive bathroom that is bigger and cleaner than my co-worker facilities (OK it's the disabled loo, but the effect is just the same)

 

7. I get free light bulbs. Yeah, I know. I don't understand this one either. Motability have sent me six now, and a power saving plug that turns off my printer and monitor when my PC is powered down. For some very good reason Motability think I need to save the planet.

 

8. We get discounts and privileges in many places. For example, the London Eye. I would not need to queue for half an hour and I pay a few quid less. why? I don't know. It's just their rules. OK I couldn't stand in a queue for that long, but why it should cost me less I don't understand. If I was blind it might make sense to discount the ride but I would appreciate the view as much as any full paying visitor. Just our privilege I guess.

 

9. I walk with a stick. It seemed daunting at first, but it was that or falling over. But what a difference it makes. Suddenly people give way to me. Shop staff are quick to carry things to the car for me. You know, I could become extremely lazy but people always want to do things for me. I have another view of this, it's a Buddhist thing. The people who I allow to do things for me, to hold open doors for me, to fetch and carry for me, also get something out of this. These people then feel good about themselves for what they did. I like to think I am creating opportunities for people to feel good about themselves.

 

10. I get to chat to people on this forum. Without MS I would be writing on Equestrian forums that are full of people nearly as self obsessed as me. My horses' entire lives are documented on equestrian forums. But here we talk about each other. We support each other and generally prop each other up. Good isn't it?

 

Now if you can't think of 10 positive things that MS has done for you then you really are not trying. Yes it would be nice if we didn't have MS but we do, so we must make the best of it.

 

Next we get on to the DVLA. Don't worry about them. If you feel you are OK to drive then chances are so will they. I have three year driving license. In 2009 they will ask my Neuro and Dr if I am OK and then give me another three year license.

If my insurance company even thinks about increasing my premium due to MS then I tear their arms off and beat them with the soggy ends. They cannot do that. That's discrimination.

 

MSers are covered by the Disability Discrimination Act ( DDA). Nobody can step onme without feeling the sting of that little firework.

 

Regards,

 

John

 

 

John

 

i read through this again, and properly where as before i have to admit i was fluctuating between despair and worse thus i couldn't take things on board properly.

 

But, now i have read it again, and WOW!! it is a real eye opener, it fits in with my wifes conversation with me yesterday and a conversation i had this morning at the company i am in partnership with, where i work from and also in Central London!!

 

I promise that i will get a grip over the next week (or so!!) and look at the positives, i never realised before but you are right, we can be likened to the fabulously rich!!!!

 

Thank you for opening my eyes

 

James

[Lindyloo]

Hi James

 

Read through some of Johns other posts... His posts are excellent and so positive ...

 

Really glad you are feeling more positive - at first it is all very 'up& down'... but you are still you..and you are doing great..

I have ms 8 yrs now... i had a terrible relpase last year and didnt think i would be right again - but i feel great now and thank god that awful time passed..

 

8 years on and if i stay like how i am now - it will be great- i enjoy everyday as much as possible and always up for a laugh.. some days i am tired and achey but i rest up and it usually goes again... when other symptoms come i do the same...Rest...rest and rest and it usually goes...

You have come to a great place here and everybody understands... we are never alone..

Take care

and chat soon

[Marina]

There are plenty of positive things about a PPMS DX. Here are just a few from my experience:

 

John, in my usual-of-late manner, I've only just seen this. It's such a superb post that I'm going to copy and pin it to this section, to help inspire others. Thank you for posting it.

[Shirl]

Hi James

 

You've said:

But, now i have read it again, and WOW!! it is a real eye opener, it fits in with my wifes conversation with me yesterday and a conversation i had this morning at the company i am in partnership with, where i work from and also in Central London!!

Which only goes to prove there is a right time for new ideas to be taken on board by all of us - if you had studied John's post closely the other day it wouldn't have meant as much as it did following your conversation with your wife!

 

I think.

[danlexboo]

Hi James,

We have a lot in common, except my glass is half full while yours appears to be half empty.

 

I too have PPMS. Personally I prefer it to RRMS as it means I don't have to take medicine every day or inject myself. I know that tomorrow I will have the same symptoms as I have today. It's consistent, I think this makes it far easier to manage.

 

There are plenty of positive things about a PPMS DX. Here are just a few from my experience:

 

1. Its not cancer. or any of a long list of other potentially fatal, life shortening DXes that you could have had. PPMS does not have a course along which you are bound to travel. It might just as well stay the same as it is now for as long as you live. It wont kill you. Just getting a DX is better than the life of limbo so many of our members are in.

 

2. To manage fatigue I have made a space in my life. Without a DX people constantly fill their lives with stuff. One of the worse culprits is "work". We barely have time to live. A DX of PPMS make you look at all the "stuff" and ditch as much as you need to make a little space for yourself. I now only commute to London three days a week. On the other two days I work from home but apart from not commuting so much I spend more time with my wife, dogs and cats.

 

3. I get pain in my legs when I walk. I don't know if you have this too. It slows me down, it wears me out, it entitles me to DLA (higher mobility allowance), it gives me a free car every three years. It gives me a Blue Badge so I can park almost anywhere.

 

4. I have bladder problems. I don't know if you have this too. If you don't then there is another positive. Because of this little problem I really can't travel by train anymore (the toilets are often out of order and that's too risky) so now I commute by car (free car) and park in the director's car park under my office. My company is good but really have very little option but to make these 'reasonable adjustments'.

 

5. I am free from all heavy work. OK some of this heavy work I have passed on to my poor wife. Cat litter bags weigh 20Kg which she now has to lug down to the cat house or carry upstairs. In the office no one ever asks me to give them a hand shifting computers or boxes of books or papers.

 

6. Having PPMS is a lot like being fabulously wealthy in that you don't have to work so hard and it opens doors for you (literally). People step aside to make way for me. At the office people come to me rather than ask me to go to them.

I get a private executive bathroom that is bigger and cleaner than my co-worker facilities (OK it's the disabled loo, but the effect is just the same)

 

7. I get free light bulbs. Yeah, I know. I don't understand this one either. Motability have sent me six now, and a power saving plug that turns off my printer and monitor when my PC is powered down. For some very good reason Motability think I need to save the planet.

 

8. We get discounts and privileges in many places. For example, the London Eye. I would not need to queue for half an hour and I pay a few quid less. why? I don't know. It's just their rules. OK I couldn't stand in a queue for that long, but why it should cost me less I don't understand. If I was blind it might make sense to discount the ride but I would appreciate the view as much as any full paying visitor. Just our privilege I guess.

 

9. I walk with a stick. It seemed daunting at first, but it was that or falling over. But what a difference it makes. Suddenly people give way to me. Shop staff are quick to carry things to the car for me. You know, I could become extremely lazy but people always want to do things for me. I have another view of this, it's a Buddhist thing. The people who I allow to do things for me, to hold open doors for me, to fetch and carry for me, also get something out of this. These people then feel good about themselves for what they did. I like to think I am creating opportunities for people to feel good about themselves.

 

10. I get to chat to people on this forum. Without MS I would be writing on Equestrian forums that are full of people nearly as self obsessed as me. My horses' entire lives are documented on equestrian forums. But here we talk about each other. We support each other and generally prop each other up. Good isn't it?

 

Now if you can't think of 10 positive things that MS has done for you then you really are not trying. Yes it would be nice if we didn't have MS but we do, so we must make the best of it.

 

Next we get on to the DVLA. Don't worry about them. If you feel you are OK to drive then chances are so will they. I have three year driving license. In 2009 they will ask my Neuro and Dr if I am OK and then give me another three year license.

If my insurance company even thinks about increasing my premium due to MS then I tear their arms off and beat them with the soggy ends. They cannot do that. That's discrimination.

 

MSers are covered by the Disability Discrimination Act ( DDA). Nobody can step onme without feeling the sting of that little firework.

 

Regards,

 

John

 

 

John

 

as always you are so right!!!

 

I was at a football match with my 11 year old last week, I admit to being tired but I could manage, When we were leaving, with the other thousands, a marshall saw my stick and escorted us through the crowd, into areas I never knew existed and back FIRST to my car. It was like I was a millionaire!!!! Being ill is a nuisance and I am in a black hole sometimes, but events like this remind me that every cloud has a silver lining!!!!

 

Thank you!!!

[Michelle]

It has it's advantages

 

Michelle

[Shirl]

Those 'advantages' work best when the grace is bestowed to us by someone who really empathises with our situation. You know when you're being patronised and that's another matter.

 

Just off out now to visit Mater & Pater for a touch of patronising and matronising! Imagine!

[Michelle]

Good Luck Shirl and Pete x

[mayb]

Hi Shirl

 

Hope you were not overwhelmed by all that parently attention!! I may be seeing my own mother tomorrow so we may both need time to recuperate next week.

[Shirl]

Hope you were not overwhelmed by all that parently attention!!

The thing about inwardly divorcing oneself from parents, (as I did earlier this year) is that, in theory, there is little or no emotional connection left so they can no longer hurt so much.

 

That's the theory; today was the first acid test.

 

I am not leaping for joy because the subject matter is extremely sad but we have nothing much in common any more; the visit was merely a polite nod to the time of year and the fact Pater is so poorly. Their total misunderstanding of how MS affects me remains overwhelmingly laughable. Their ability to be dismissive of my husband's character and anecdotes, his real wit and true care for me, proved how right I was to, from henceforth, refer to them as the DD - Dorset Duo.

 

All the very best tomorrow Mary - let me know how it goes. Leave your fragile emotions at home - cover your vulnerability so that it does not show at all.

 

I sound so bitter but better that way than curled up in a sobbing ball of tears. Those who've followed the effect of the DD in my life of recent years will know the truth behind this apparent hard shell. I'm actually a seething mass of love and compassion for all fellow men - just not the DD.

 

Enough said.

[mayb]

Hi Shirl - no need to explain to me as I empathise totally as you know. I had a wonderful time today and am totally exhausted but happy that it all we4nt so well. Cant see how I managedf to type the odd letters and numbers that keep appearing but wil lleave them in as it makes it more interesting.

 

My mother arrived and it soon became apparent that she wanted to tell me all about herself and her problems relateing to my faterh nmow being in residential care. I did my best to nod at the right moments and say the right words baut a bit of my mind was elsewhere and I moved on to circulate with all the rest of the family - who had turned out inf force.

 

Afterwards all of my friends said how nice it was to see my mother and my son's partner remarked how alike my mother and I were, how sociable and kind she was - I couldn't believe it and was quite upset. However, my son said that my mother had sought her out and been extremely nice to her and complimented her on the day and on the lovely baby. That made me feel better but it also amazed me some more. Tehre is obviously another side to this person not often show to me. I dutifully said good bye and that is probably it for another eon.

 

Perhaps now she is on her own she will be wanting more attention form me but I am not sure I have anything to give wich is sad but true. She never onece ommeted onme or asked me how I was. Perhaps it was selficsh of me to want that but then again she is my mum and I expect some curiosuty from her. I have to apologise for the typing is just wont owrik tinight an d it si uquie funny when left like this.

 

tiem iwent to bed.

[Shirl]

(False - unnecessary) pride makes me edit my posts but you've made me think -sometimes it is a more real gauge of how we are if we leave the typing to speak for itself - but I have an irresistible spellchecker on my FireFox toolbar!

 

You Mum and mine sound so alike. Same era. Mine goes around the family telling them how much she cares about me but not phoning to ask or speaking about it when she sees me. I noticed an MS Society orange awareness bracelet on her dressing table. It could be an old one as she is more of a hoarder these days but the fact she has kept it means something to me.

 

Sadly, we will only really know my real mum once dad has passed away. If indeed he is first to go - he is hanging on in there with terminal cancer. Supposed to have died over a year ago and he's doing it with no treatment, other than support counselling. My mother is looking after him too well - and sometimes rather resentfully.

 

Life is so complex - I wonder if I even know myself well enough some days!