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Draken is back as Drakie!!

WAY HEY HEY - I think I've fixed the problems I had!!  I've had to create a new account and password so will be using this from now on but hopefully its worked so I can come on here whenever!  For those of you that didn't see my other post - thank you ALL for your kind words.  Its so nice to feel there are others out there that have bad and good days and who all feel like crying at times.  I feel like friends with all of you.

I made a posistive step today - I was out with a friend and saw a 'normal' looking lady in a wheelchair so I gently approached her, got talking about her feelings and we ended up swapping emails and she said I could ask ANYTHING I wanted about my fears etc.  All your responses have made me realise  that IF I END UP WHEELIE BOUND its not the end of the world but the beginning of a new one where I can still get out - albeit slower!!

I think I've mourned a lot over the life I've had to more and more leave behind. For my honeymoon in 2003 I climbed Scafell Pike in the Lake District with my husband...har har har...no more!!  Daddy will just have to take the kids whilst I have coffee at the bottom - but you've helped me realise that this is not the end - it just means mummy has to do this diffently.

I'm defo not depressed - took a self help online quiz and positively passed 13 out of 15 questions...I know its only a silly quiz but it proves to me I'm not.

Not taking drugs. Took (I think it was called) Gabapentin three years ago and took myself off cause they did nothing and I crashed the car three times in six months. So on nothing and don't feel I need to be.

Nothing has kicked off these feelings apart from being rubbish in this heat.  I'm defo walking worse than last year so I've no idea if I'm developing progressive MS or not?  Any ideas?  Am I?

Well - hello and thanks again to you all - I hope I make friends.  By the way - is this and English site?  Where are you all based?  I'm Bournemouth in England.

xx Nic

 

Hi Nic,

I replied to your last post.

Have you got an ms nurse?

Do you know what type of ms you are diagnosed with?

I am unsure if you have the support you need?  Have been offered DMD's?

Gabapentin is a medication thats used for neuropathic pain.  The DMD's are to help reduce the severity/frequency of relapses if you are still having relapses?

Teresa. x

Hi Teresa...yes I did get your last post so thak you!! Its so wierd how we are so similar!!

Yes I do have an MS nurse down here in Bournemouth.  I have rela[psing and remitting MS and have need their support slowly for now. 

I have never heard of DMD's and never been offered them.  I did have 3 attacks in 2 years but now nothing specific since 2008 so they've left it.  Its only been last 6-8 months I've been feeling worse with realy bad feeling past 3 months.  Not ben in contact with them about it cause kinda think I've just got to get on with it but I do have their number on speeddial and can call them whenever I want.

Where abouts are you?  Do you have MS did you say??

xx Nic

...hey - rushed writing that - ignore the many spelling mistaes. Duh. x

Hey Nic - shy bairns get nowt and he who shouts loudest etc. please read up on dmds they reduce relapses and slow progression. You have to meet criteria to qualify I think it’s 2 significant relapses in a year so you perhaps would have qualified.
Sorry if you think I’m nagging- my husband does quite often!!!
Hugs min xx

Hello Nic,

I cannot remember writing to you before but hi. I live in the south of England and have SPMS and have been given Gabapentin for the neuropathic pain, haven't actually started it yet but I'm forever hopeful.

Janet

x

Hi Nic

Do you take vit D? I take this in high doses, plus have B12 injections (which boast my energy levels and help with oxygen uptake). I also have oxygen treatment (HBOT) which keeps me going on a weekly basis.

There is a HBOT centre in Portmouth which is just along the coast from you (there might be one nearer but I'm not sure).

I've found these things have helped me and although I know we all have differences I think these are worth a try for anyone to see if they help.

As I've said before I'm in a wheelchair now, but I don't get around slower in fact I'm much faster than I used to be when I was continuing to try to walk.  I've grown to love my wheelchair - its my freedom.  I'm pleased you talked to the woman you met in the wheelchair and pleased with her response to you as it makes people realise we are just normal people.

I think about the things I used to be able to do when I could walk, I was a walking guide at one stage and have done so many outdoor activites.  My life is different now but I am still excited about the things I do and the friends I meet.  Life goes on and we have to enjoy it the best we can.

I know its difficult thinking that your children will have most of their activities with their Dad and not you.  I asked my children if they felt they'd missed out as a result of my MS and they said NO. They just see it as part of me and we do other things together instead.  So just think ok I can't do the walk but I can be there when they return and have drinks, food and treats ready for them - and guess what when they recall their outing they remember both parts.

(((((Hugs))))) Mary

Hey all - thanks for your kind responses.

Min - so funny - my hubby nags too!!

Janet - Where abouts on the South Coast are you?  I personally found Gabapentin sluggish on me (actually fell asleep in the middle of a conversation once!!). They have mis-prescribed it to me so therefore didn't need it

Mary - your words are so lovely. The more and more people tell me stories like yours the more I like to hjear them.

Thank you all again

 

Nic xx

Nic,

      Do read up on Vitamin D3 deficiency and MS- just type it into google - you will be shocked when you read all the info on recent research. Make sure that you give it to your children as well as yourself. As they are at risk of ms - nobody lets their children out in the sun anymore without slapping on suncream. Still we do not get enough sun in the UK - this is why Scotland has the highest ms population. Amazon is the best place to source vitd3 - Healthy Origins 5.000ius is about £15 for a years supply. lt comes in little softgels -[ which can be split and squeezed onto food for children]

There has been a good thread on Vitamin B12  on this forum the last two weeks. We are so fortunate to have members who are so knowledgable. Vitamin b12 deficiency symptoms mimic ms - do the same damage to the myelin.

l have had secondary progressive ms for 30yrs - l have never taken any of the disease modifying drugs [dmd's] as l have the 'wrong type' of ms. But for the last 4yrs l have taken LDN [low-dose naltroxine] which has made life much easier - and l have not progressed since taking it. This l learnt about on this forum - and l wished l had been told about it years ago.

F.

Thanks Campion - no I had never really looked into anything like your talking about but you can be sure I'll google it now.  Thank you so much for the advice xx Nic