Any info on MS?

[Julie]

Hi all,

Totally off the debt subject - my best pal has MS, has had it for 7 years and so far been pretty good. She's on daily injections but manages to live her life to the full.

She's been feeling a bit low the last few days, put it down to the dreaded flu that's been around -but her doc has just told her she has to go into hosp as she's in 4.0 of a relapse? Any idea what that means?

She's had one or two relapses before but nothing thats meant a hospital stay. I'm always absolutely honest with her whilst being supportive. I'll be going to see her straight from work so any advice / info will be gratefully received.

Thanks x

[Skippy]

I'm sorry to hear about your friend Julie. My dad had MS and I know what a horrible illness it is. I can't offer you any advice as he had the type where you don't get relapses and got progressively worse.

You might be able to find out more information on the MS Society website - www.mssociety.org.uk - or the MS Trust website - www.mstrust.org.uk.

A big hug to you and your friend.

[debtfreesusie67]

Could it be this Julie?

Expanded Standard Disability Status Scale (EDSS)
The EDSS scale extends from 0 (normal neurological examination) to 10 (death from MS complications) in 0.5 unit increments. EDSS 1.0 to 4.5 refers to patients who are fully ambulatory. The precise steps are denoted by functional scores which are graded from normal (0) to maximal impairment (5 or 6) for pyramidal, cerebellar, brain stem, sensory, bowel and bladder, visual, cerebral or mental, and other functions. EDSS 5.0 to 9.5 are defined by impairment to ambulation. The definitions for points 3 to 7 are given below: 3 Moderate disability in one functional score or mild disability in three or four functional scores, though fully ambulatory.
4 Fully ambulatory without aid; self-sufficient; up and about some 12 hours a day despite relatively severe disability consisting of one functional score grade 4 (others 0 or 1) or combinations of lesser grades exceeding limits of previous steps; able to walk 500 metres without aid or rest.
5 Ambulatory without aid or rest for about 200 metres; disability severe enough to impair full daily activities (unable to work a full day without special provision); usual functional scores are grade 5 alone (others 0 or 1) or a combination of lesser grades, usually exceeding those for step 4.0.
6 Intermittent or unilateral constant assistance (walking stick, crutch, brace) required to walk about 100 metres with or without resting; usual functional score equivalents are combinations of more than two functional scores grade 3+.
7 Unable to walk beyond about 5 metres even with aid; essentially restricted to a wheelchair; wheels self in standard wheelchair and transfers alone; up and about in wheelchair some 12 hours a day; usual functional score equivalents are combinations with more than one functional score grade 4+; very rarely, pyramidal grade 5 alone.

[Julie]

Thanks Skippy - i'm on the website now, bit of a maze to be honest. I think 4.0 means moderate disability compared to 6.0 which is severe.

I know she'd rather hear it from me - life is so unfair eh, she's only 36 and with 3 children.

Sorry to hear about your Dad and thanks again for the support.

[Julie]

Sorry Sue I was typing away when you posted.

That looks like it - reading it a 4 doesn't seem too bad ( hope that doesn't sound flippant). I'm really grateful for the help. I'll take it to show her.

Thanks ever so much x

[Skippy]

That's so sad.

I was 4 or 5 when my dad was diagnosed and one of my biggest regrets is that I can't remember him walking without a stick.

Life is unfair - dad was a lorry driver and he'd saved up the money to buy his own lorry when he became ill so he never got to live his dream.

Hopefully one day they'll find a cure x

[Julie]

God Skippy - thats sad and goes to show we shouldn't take our parents for granted eh.

I'm going to see my pal now so thanks for the support. x

[Lisa2009]

Hi julie

I too have MS and had 3 relapses in 1 year before i knew what was causing my problems.
I have the injections but due to unforseen problems i have had to reduce them to every other day. I also had 5 lots of chaemotherapy which is currently in trials for MS thats being quite aggressive.

I used to be out all the time before i was diagnosed. Now i lead a shadow of the existance did before, but i get on with it.
We have 5 children between us, 2 of which recieve DLA and some days are extremely hard. Its difficult not to let them see that you are in pain and suffering because i dont like them worrying.

The 2 girls always offer to help me out with things around the house which is lovely.

Its so unpredictable and i just never know if tomorrow is the day im gonna relapse.

I really feel for your friend, its not an easy illness to live with especially when you cant sit down for ten minutes without nodding off.

Anyway, i hope your friend makes a good recovery. I would imagine she will be having 3 days of steroids and they will wait for them to kick in before sending her home.

Best wishes to you and your friend. xxxx

[animaleyes76]

I read this, wanted to comment but felt.. kinda embarrassed to.

My sister has MS, she is 4 years older than me.. We haven't ever really got on but since i found out as a result of her collapsing, going blind in one eye, having lots of MRI scans and being lucky to be covered still by my dads private health care.. she was quoted 5 months for an mri on nhs, my dad got involved it was 1 week, we became closer

They still didnt diagnose.. she collapsed the day my mum got married for a second time.. and never made the ceremony.

I have no idea her level of MS, very low but i guess i felt shame for not even knowing the level my sis has.. we still dont get on but things have changed so much. We talk these days, she ob doesnt want to re illness.

ive seen MS rip my best friends family apart, i cant say my sister an i are close even after the ms thing, an i know so many people will think that is fcuked up.. its brought us closer, a little bit at least

its a scary place to be and .. well i totally sympathise with anyone having to deal with it..

this might sound really wrong, and like i dont care (i do , a lot) . it's sad it takes something like that to bring you and your sister/brother closer to you. I'm not preaching but to anyone who might be in a hate hate relationship with their sibling.

Think about it.. cos life REALLY is too short.. My sis has 4 kids an has MS.. I am single an ok.. how guilty do i feel....

waffle over.. xx

[Julie]

Thanks everyone - Saw my friend last night, she wasn't her usual glamorous self but she was ok. She was assigned a nurse when she was first diagnosed, but stubborn as she is, she stopped her from coming to the house. We phoned the nurse last night and she's calling around today. She too mentioned steroids Mrs Skint. At least she'll be able to answer questions and hopefully make my friend take it easy for the next few days.

Animaleyes, please don't feel guilty - its not your fault. Sometimes it takes something like an illness to put things into perspective.

Mrs Skint you must be a very strong person and I admire your bravery. I often "forget" my friend has MS 'cos she makes so much effort to "be normal".
Thanks again for all of your kind words. Its so comforting to know even though we all have money problems etc, you have all put these to one side to offer advice.

Thank you x

[Skippy]

I have so many regrets about not being there for my dad as I got older. For years I blamed myself him being so ill - when I was 11 I begged and begged him to go to my school sports day, even though he hated being seen in his wheelchair. He went, but he got very hot and went to bed that night and couldn't get downstairs for 2 years, when social services had an extension built.

I wish I'd been closer to him when I was growing up - we've got so much in common that we could have been friends as well as father and daughter.

Like Animaleyes says, life is too short - tell people you love them and how much they mean to you.

[Lisa2009]

skip you mustnt beat yourself up about it. I would be devastated if i thought my kids felt like that. Just remember the good times with your dad xxxxxx


julie
Im not a very strong person, i wish i was. Its just that i cant expect my kids to be positive if i dont seem postitive. My little boy is Autistic and obviously doesnt know whats happening, although sometimes he asks me if my legs are killing.

My 1st symptom was blindness in 1 eye. I had another 2 different episodes after that and my GP thought it was either a stroke or MS so i was immidiately sent to hospital, where gradually i got worse. Four days after being admitted i was given an MRI scan and told 2 hours later that without a shadow of a doubt, i had MS.
Sometimes i crumble and cry a lot. My mum shouts at me because i try to keep it all to myself but when i do open up she cries too and i hate to see her cry so its easier to suffer in silence.

Tell your friend to give the steroids a chance if shes offered them. It takes time but eventually the relapse passes. Theres no other advice i can give because who knows when a relapse is going to happen or how its going to affect you this time.

look after her xxxxxx