Just diagnosed with MS

[Dededum]

Thats it really, not a huge surprise (but I had just been struggling on so hadn't thought about it). DH in America till Saturday, parents in Scotland, kids at home so staying out of there way.

Feel tired, bit teary, a bit relieved that my inability to walk more than ten minutes isn't me being lazy or not determined enough. Just actually that I need to make some life style decisions. Never been ill really in my life, I used to love walking, used to walk all over London. Sad that won't be able to do that again, but happy that I did loads of adventrous stuff when I was younger.

Just wanted to write it down. Thanks for listening.

[pollywollydoodle]

hi almostamrs

i go to the trial centre in bham for my interferon and reviews ladymary

[Dededum]

Hi almostamrs

Sorry to hear of your diagnosis. Today is my months anniversary since my diagnosis.

How is it going? What support are you getting?

[moodyblue]

Hello almostamrs waves back. Sorry you've had to join the ms gang but welcome! I'm at QMC too.

What type of ms do you have and are you having any treatment?

I have felt hideous all day - drank too much wine and pimms last night catching up with an old friend. Have been really off balance and dizzy all day. So far one of the worst effects of ms! Hope it's not one of the symptoms that stays permanently!

[LadyMaryQuiteContrary]

Hope you're feeling better, moodyblue. I get the pissed feeling when I relapse. Poor ds has to walk with me to the doctor of I end up walking into things (I swear people think I'm just drunk). It's interesting trying to get to the hospital!

Hope you're all well.

[Dededum]

Hi Moodyblue - hope you are feeling better.

Had another physio this morning, I get 5 on the NHS. Really useful.

Off on holiday tomorrow - to Scotland. Hope the nice weather stays

[almostamrs]

ive had one episode of ms and got my diagnosis from lesions on my spine and brain as well as bands in my lumbar puncture

im not on any medication, getting married in 5 weeks and hoping to try for a 2nd child around xmas so keeping away from medication

im back at qmc in 2 weeks for a review with my consultant, im struggling with tiredness but I have a toddler so not much chance to rest but I cant complain

[LadyMaryQuiteContrary]

There's some tips on how to manage the fatigue on here, almostamrs. Congratulations for your wedding, you must be excited! I had a lumbar puncture, they are nasty

Have a lovely rest, Dededum.

[moodyblue]

Hi guys. I'm in Wales with the kids this week. Was a bit worried was relapsing cause the drunken feeling lingered and vision went iffy in my right eye. Think I'm ok though - hope so as do not want to be stranded here and due back at work next week! Hope you're all ok.

[LadyMaryQuiteContrary]

We're having a staycation until the end of August. I'm so pleased all is well. Have a lovely time and take it easy!

[Dededum]

With a summer like this, why would you want to go anywhere else?

Bit rainy today but the good weather is coming back apparently. Lovely day today playing with cousins, loose in the village, down on the beach. The sort of stuff that memories are made of.

[LadyMaryQuiteContrary]

It's rather chilly in my living room (old house). I can't stand the heat, it just makes me bad tempered. Sounds like a lovely day indeed, Dededum. ?

[moodyblue]

cheers Lady! I'm back home now. Was feeling odd so was anxious to be back on home ground. Can't believe how hard I had to concentrate driving home. Was wiped out when we got back. I'm going to see how I am over the next couple of days then might have to ring nurse.

Hope you're having fun dede and good luck at the hospital almostamrs.

[LadyMaryQuiteContrary]

I hope you start to feel more like you very quickly. Give them a call at QMC, the nurses are lovely.

[Dededum]

Moodyblue - hope its not a prelude to a relapse.

[clarkykitten]

Hi,

I'm finally drumming up the courage to say 'hello'. I am 35 and was diagnosed back in 1993, aged 15 (though I actually had my first relapse -optic neuritis - when I was 13.)

I have been really well (my consultant said that I had 'benign MS') until this past year. I now have problems walking for more than 5 minutes without my foot dragging and I am unbelievably tired (but who isn't with a 5 year old and a pre-schooler?!)I know that I am really lucky in comparison to some people with MS but I am finding it hard to adjust and I know my DH is too.

Anyway, just want to say hello :)

[LadyMaryQuiteContrary]

Hi, clarkykitten. There's things that you can do for the fatigue; no carbs at lunch time and trying not to sleep as much during the day (this is difficult but it does work). It must have been a shock to have been diagnosed in your teens, it feels like a ticking clock sometimes. Are the hospital helping?

Hope you're all OK today.

[clarkykitten]

Hi LMQC thank you for your reply :)

To be honest, I haven't had much input from the hospital (QMC). I did go last year for the first time in 5 years as I had noticed my symptoms getting worse - but she said that I couldn't expect to have MS for 20 years and have no symptoms! Which makes sense, I guess, but I still found the physical change in my condition difficult - i suppose as I had been well for so long!

I don't qualify for any medication as I have only had one relapse in the past 5 years and my problems are just symptomatic apparently but I am due to go back in Oct to see them again. I was thinking of calling the MS nurse just to chat before that though, as she may be able to give me advice - at what point do symptoms become spms, as I seem to have my symptoms most of the time!

Thanks, it really helps to get it all out here, I don't know anyone with MS in 'real life' so it is great to talk honestly.

I don't mean to hijack dededum's thread either. Hope that everyone else is doing ok and the slightly cooler weather is helping, I know it is for me!

[moodyblue]

Well I feel dreadful today but had a couple of glasses of wine agin last night. So clearly I'm going to have to avoid alcohol for a bit again (or wine at least!) boo hiss!

Hello clarykitten. Glad you plucked up the courage to say hi, though not glad you find yourself needing to obviously.

Hope you're all doing ok x

[LadyMaryQuiteContrary]

Do you want the number for the MS nurses, clarky? They are (sometimes) a lot more helpful then the doctors. They can refer you for physio and there's medication that they can prescribe for the fatigue (free amphetamines on the NHS! ) My local is QMC too.

Oh, that's poo, moody! I don't drink much, I'm just high on life. Take it easy.

[clarkykitten]

I have it thank you LMQC, so I will ring them soon. I didn't know you could get meds for fatigue!

moody I notice alcohol affects me too, I keep trying to convince myself that chocolate is a good substitute. Then I see the bottle of red and end up having that anyway and the chocolate

[LadyMaryQuiteContrary]

There's 2; Amantidine and provigil. I did take Amantidine for a couple of months but stopped as I had some acupuncture and that seemed to help.

[Dededum]

Hi clarkykitten, welcome.

I was thinking of renaming the thread - MS coffeeshop. The more the merrier!, though obviously as Moodyblue says very sad that you have to join us. It must have been very scary to be diagnosed when you were 13.

I have had the walking thing for about 5 years, I have found yoga, general stretching does make a difference. And now just had a couple of physio sessions, REALLY helpful as they isolate the problem muscles and give you exercises to strengthen the weak muscles. My problem side is alo the right, my left hamstring is bigger than my right, obviously compensating. I went to the doctors and asked to be referred. Having small children and not being able to walk is a bit of an emergency!

[clarkykitten]

To be honest, I've had it so long now, that I don't remember NOT having it! I think that is why I am finding it hard to adjust recently - I was well for so long (I went 8 years with no relapses, had 3 in quick succession, then another 5 years of nothing). So now the fact that it affects me every day, it is a bit like having to deal with the diagnosis side and what it all means all over again.

Hey ho. I have booked a couple of days off work next week while the kids are at the in laws, so I am going to do NOTHING and just completely chill out :)

[Dededum]

Clarkykitten - how long have you had the walking difficulties?

[clarkykitten]

I really noticed them starting last summer - I suddenly felt really tired around June time then I noticed that my leg started dragging after about 10 mins walking... Now it drags within a minute or two (very slightly), but the biggest thing is that I always feel like I am walking through treacle - not sure if that is a fatigue thing? But my legs generally feel 'weak'.

Are you the same dededum?