Still about :)

Hello all. Hope everyone had a great weekend. I managed to have a trip out, hubby drove. I had to walk a little, then, when I sat down in the cafe bit I felt like I was going to pass out. It happens each time I relapse, my legs start after the brain worms( as I affectionately call the weird brain feeling). I feel wiped out but I’m definately on my way up the relapse hill, which I don’t mind as the sooner I get up it, the sooner I can get back down the other side of it.

ive had a lot of heart flutterings with this one that I’ve not had before, so this is a new one. I’m having all my usual : bladder ( can’t go or not fully emptying), dead legs, spasms, cognitive, confusion, seeing things , loss of sensations on left side…and so on. I also have ear ringing that’s upped the tempo. The cramps have also been more severe this time, the vertigo is also increasing. So I think that’s about it for now.

hugs to everyone and chat again soon x

hi beverley

it amazes me to hear how brave we msers are!

i’d like to think that i’m brave too but soemtimes i feel far from brave.

heart flutterings can be a side effect of DMDs. check the leaflet that comes with yours or speak to your ms nurse.

cosy up and wait for it to pass.

hugs back at you and chat when you feel up to it.

carole x

1 Like

Hi Beverly

good to hear that you are coping with the relapse symptoms, but sorry to hear of the new ones- were these gradual? carole is right- MSers are brave and you are strong.

i’ve managed to get up at 7.20am which is a first in a long time, and we’re taking the kids bowling today.just hope a fight doesn’t break out!

all the best fluffy

1 Like

Oh Beverly, unfortunately I know how just about all of that feels! Brain worms - lol! What I don’t understand is how you can feel pain or weird sensations seemingly in your brain, when that organ is supposed to not have sensation?!? I get an odd crawling feeling sometimes. Maybe its really the scalp but it feels like its inside the skull. shrug Take things easy and I hope you get to see the view from the top of Relapse Hill soon xx

Thanks everyone :slight_smile: the brain thing (worms) is when it feels like my brain is doing somersaults and wriggly in my head. When that kicks in proper, I get slow vision and other weird vision goings on.

im not brave at all, I always think there’s someone worse off, because there is, I put my symptoms up as I think it can be useful for someone else to read it and think ‘I get that as well’ or ‘glad I don’t get that’ :wink:

im not on DMD’s yet as I’ve got to wait to see Neuro again to establish what type of MS I have and whether DMD’s would work. I’m on Humira which we think caused this in the first place (MS is a side effect) :confused:

sorry for basic fact message. I’m not reading too great or writing/ typing too great. Hugs to everyone and thanks for your lovely messages xxxx

Beverly I’m sorry if I seem dim but are you saying the drug Humira is thought to have caused your MS and that MS is a side effect of taking it? We’re you ever warned of this?

Jan x

Hi Beverly,

Our symptoms are so similar, I have Artrial Fibrulation that causes odd hours of irregular heart beats.

I have a wave of pain at the base of my skull at the back of my head which is then followed by vision problems and a slow down of my body in general, it lasts about 10 minutes. I have no vascular damage behind my eyes so the things that I see are my brain playing tricks on me, so I am told.

i have not been on here for a while, it’s nice to be back.

good luck with your appointment


Thanks poppyseed, wow, how awful :s I hope you’re alright and coping ok with it. I’ve had heart scans and they showed nothing. I also had those things that you keep on 24 hours and they showed nothing, so I can only presume it’s part of my MS? Dunno to be honest. Off to the doc Friday to get antibiotics for my chest, I’m still finding it hard to get a full breath,I think I have a chest infection of some kind. Doesn’t rain, it pours lol xx

janhhh…yep, I was told I could get complications and had to sign a form ( probably to waiver any right to sue, even though I wouldn’t anyway). Yes, in the paper insert of the injection package, MS is listed as a side effect. My bowel specialist , who put me on it for my Crohns a Disease, will not say it’s MS. My Neuro on the other hand knows it is,as does my GP. It’s been a bit weird as no one wanted to accept liability by saying it was MS for quite a while. All I wanted to know is what the heck was going on with my body. Now I know at least I can get treatment, hopefully. I knew there’d be risks, I’m not daft and I also was in such a position that it was either Humira and surgery or no Humira and a colostomy, it was that bad. I was also starving to death as my weight plummeted and I wasn’t taking anything in from my food. So it was a rubbish situation and I took the best option I had. I’m not the first, America actually has lawyers dealing with Humira claims, though I didn’t know this when I started it : s xx it did it’s job to sort the Crohns, I’m just unfortunate thati got this too xx

Awful situation to find yourself in, damned if you do and damned if you don’t! You seem to deal with everything admirably I’m not so sure I would.

My mum had Crohns about twenty five years ago, they operated thinking she had bowel cancer and removed part of her bowl it was only then that they discovered it was Crohns. She has been fortunate not to suffer since and didn’t need a Colostomy.

You would think if taking something could trigger MS then they would find something to stop the trigger.Oh well dream on.

Jan x

Aw thanks janhhh, sorry to hear your mum has it but glad she’s doing alright. Yeah, not a nice condition at all. I think I’d tried every drug every diet before they put me on Humira, last chance hotel lol. I’m glad it worked but unfortunately I copped for this too. The luck of the draw :wink:

hope everyone is alright. I’m trying to carry on with my usual jobs, slowly :slight_smile: have a good day xx

Hi Beverly

I can’t imagine what you must be going through with the other complications you’ve mentioned, as well as professionals not wanting to support you properly/ take some responsiblity AND the actual MS to contend with. this leads to one obvious conclusion that i won’t hear any argument against- YOU ARE BRAVE and should be proud of how well you are coping with all of this. i imagine hubby is most proud of you.

I hope the appointment on fri goes well for you, and please speak to your GP to see if he/she can offer anything to support you, as you don’t deserve this.

take care- with extra hugs, fluffyolliexx

1 Like

Aw, thanks, nice of you to say but I don’t think of myself as brave at all. I plod along like everyone else :wink: today was a better day, managed to get things done but now I’m feeling a bit off. Ears buzzing, speech playing up. What a pain in the bottom.

Hubby is frightened to death of it I think. He works away in London so he’s away Monday to Thursday. He helps in the way that if I need anything he provides and tries to understand as best he can. That’s all anyone can do really. That’s why this forum is so good, we are all in the same boat pretty much. Xxx

i totally agree. my MS nurse told me that there are courses (will find out who runs them) which are designed for both MS sufferers and their partners, and as part of the course, partners meet with each other, and MS-ers do as well. i wonder if there is one near to where you are, as that may help both of you. me and my wife are going to find out more from the nurse asap. it must be hard for both of you if he’s working away, but must be nice to have him home for 3 whole days? whilst i’m here, i repeat, you are brave and i won’t hear anything to the contrary… that’s our MS mate you’re talking about. hugs xx

1 Like

You are brave. Courage is not a lack of fear, but having the heart to get on with things even whilst feeling the fear.

1 Like