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16 weeks and counting !!!!

I have been in a nasty relapse now for 16 weeks, and getting worse, i am really scared now and feel this is it, i actually feel like i am dying, i look terrible, and my family are getting worried too,i can see the fear in their eyes,i am in bed most of the time, because i am too ill to function,i have got over some real bad ones in the last 7 years but i really fear that this time its going to kill me,has anyone felt like this and got better from it, i really feel like i am loosing the will to live.

Have you contacted the neuro,gp or ms nurse?

I would of thought you should of been given steroids before now.

I sorry I have never been that ill with one but to me you need to be seen as a matter of urgency.Is there possibly something not ms related that is making you feel that ill?

Please get your family to sort out someone seeing you.

Hang in there.

Pip

Hi Pip, i am seeing the ms nurse next week in clinic, steroids are no good,as they only give you them in the first few weeks,so i am told,and i dont want them anyway,its definately the ms, i get like this with my relapses, now i am spms, and have been for the last 7 years, my ms lesions are on my brain stem, and thats why i feel so bad,because of where they are,i am just getting really scared now, i have struggled on for years just waiting my relapses out,because every time i mention my MS all i get is ’ theres nothing we can do’

i was just looking for some reassurance because this ones gone on even longer than my other ones.

and i dont have much strength to fight this one,theres only so much you can take really isnt there?

Hi Jaki

Sorry to hear you are having such a hard and worrying time. I’m SP too but still have periodic relapses and when they hit me they hit me hard too. The only treatment that has made me feel better is oxygen treatment (HBOT). Have you tried this? I go once a week and it keeps me going inbetween. Like everything that comes along for MS it works for some and not for others, but it works for me and might work for you too. It’s worth a try. And there is nothing to lose by trying it to see if it will help you. So there is something we can do despite what some experts say, I know there is no cure but we can do something to reduce its impact. HBOT has done this for me so if you have a MS centre near you that offers HBOT why not give it a try.

I hope you start to come out of this relapse soon.

Thinking of you.

Love, Mary

Hi Mary, thanks for your reply,

HBOT ,well i keep thinking about trying it,but for some reason i am scared to ,and at the moment am too ill to get there every day for 2 weeks, but when i can i am going to visit the center in Leeds, and take a look round,anythings worth a try isnt it ?

I know some people say it really helps,and i am pleased you get good results from it,because as we both know,we are just wrote off when we go secondary progressive, i have always ‘just got on’ with my MS,but finding it harder these days,

Thanks Mary.

Love jaki xxxxx

Jaki - do give the HBOT a try if you have a centre near you. l haven’t - its miles away - otherwise l would try it. My brother was a professional diver - and he often had to use the HBO - He said it makes you feel better whatever is wrong with you.

l have had spms for 30yrs - and have stayed more or less the same - l do not have relapses as such - but then l am never without the disability it causes. For the last 4yrs l have been on LDN -and feel much better for it - also l take at least 10.000ius daily of vitd3. This has helped - ln many ways.At least l have not progressed in the last 4yrs. Wished l had known about them years ago. l am looking into changing the vitb12 l take to something stronger after reading the very interesting posts on it this week on this forum. My GP will not prescribe b12 injections - saying it is only people who take dmd’s who need it. From what l have learnt this week - it is all of us - and the blood test that the GP’s do are not comprehensive. l have read ‘Could it be B12’ and googled lots of info on b12deficiency as it ‘mimics’ ms - by destroying the myelin.

l refuse steroids - had a long course of them about 25yrs ago - and l am convinced they did more harm then good.

F.

Hi Jaki,

I am so sorry to hear that you are having such a rubbish time at the moment. I to have SP but up till now I have been managing, you frightened me somewhat when you said when you reach SP they stop worrying about you. I’m sure that’s not really the case, it’s just you are feeling like s**t that you think that way. Do try what Frances has suggested, you never know it may bring you back to ‘normal’ In the meantime I send you (((((HUGS))))) and hope you feel better soon.

Janet

x

Hi Janet, thanks for the reply,when i can get out of bed, i am going to give the HBOT a try,i wouldnt say they stop worrying about you when you have spms, there just isnt any treatment for it,last time i saw the ms specialist, my partner asked him outright,wasnt there anything they could for me ,and he just said 'sorry but no, theres nothing we can do ’

In all my 20years of MS i have never been offerd any treatment,dmds were not about ,so i have been left to ‘get on with it’ and i have becocme my own expert in my ms,good job really.

Jaki, I’m sorry to hear how hard things are for you now. I just wanted to let you I was thinking of you and i hope things do setle down.

Jacqui xx

Hi jaki, Im really sorry to hear how bad you are feeling. 16 weeks is a chuffin long time for a relapse…especially as it is so severe.

You say you are seeing the ms nurse next week, in clinic. Are you going to be able to get there?

I know MS nurses do home visits, if they can.

I truly hope you find an improvement soon…poor you.

much love, Polly xxxxxxx

Hi Poll, thanks for your reply, i have had the ms nurse come to visit me at home,last year,i was supposed to go to clinic but if i am not any better i will cancel,dont like asking her to come out to me, feel a nuisance,and its not like they can give me a magic pill,wish they would though,becasue i am really fed up of feeling bad all the time.

xxx