MS stuff

[TheClaws]

Great to see this new area set up ... in this thread, could we talk about our MS issues? Anything to do with symptoms, treatments, medications, alternative therapies, questions, chat - even a general let off steam is fine

Little I am sure you haven't given it to your child as I don't believe it's hereditary at all. I'm sure I asked the same question.

I was diagnosed last year and it was scary. But having talked to the medical staff there is a good chance of living a relatively normal life. I'm still working and doing most things I usually do. I have some loss of sensation but full function.

I truly believe that waiting and wondering is one of the hardest parts. I hope you are able to find answers soon @LittleLionMansMummy.

I see I posted on this thread last year when I was still in my "I don't need drugs, my MS is easy to deal with" phase.

Last August through to October-ish I had another relapse. "Thankfully" during this time I was scheduled for my regular MRI and MS clinic appointment. The relapse reminded me of what the MS could do and this time I filled the prescription. Whereas originally I had been prescribed Copaxone the doctor said my relapses were actually quite intense so we should go with something stronger. I've been on Tecfidera since October with more or less no issues, some GI upset as I was ramping up the dose but nothing too bad.

I hope everyone else on this thread is doing ok. I think I'm still in shock that I actually have this, it was not on my radar at all, even in the week where I ended up unable to walk.

And I have a question for the more experienced MS people. Does your weight fluctuate with flare ups? In what I now know to be my last flare up I put on a lot of weight that has started shifting as I felt better. I've had this on 2 previous occassions where I've had a year of feeling exhausted and foggy and weight has piled on. It won't shift at all. And then suddenly it starts to go. I know logically tired = less movement but it seems out of all proportion. I'm not a sporty type at my best!

LittleLions Good luck with your MRI. If your blood tests came back OK, that’s a good sign. It may well be nothing but just tiredness or hormones settling down. To your question, it didn’t take long for my diagnosis. I did have an inkling of what might be wrong, so I wasn’t that surprised when my lumbar puncture was positive.

GrockleBocs I haven’t really noticed much weight fluctuations between flare ups. If anything, I put weight on when I’m in remission and lose it when I’m not.

RosieMapleLeaf It will get better - I promise! Stay on your meds, though.

Thank you GrockleBocs and Rosie. I'm currently swinging between "even if I've got it, I may be able to lead a relatively normal life for many years to come" and "oh shit, this wasn't in my plans for the future". Very tearful day yesterday.

TheClaws I wasn't sure how to take the negative blood tests tbh, as I think they use them to rule out other illnesses with similar symptoms rather than to diagnose ms? On the one hand I'm pleased that it's unlikely I've got something like cancer, which would be my absolute worst fear, on the other I feel more certain that it's possible I have ms instead, otherwise why would I be having these symptoms but bloods all fine?

I've had a heavy cold which I was getting over, but felt totally wiped out last night and was in bed by 9pm. Spent much of the night tossing and turning because I ached all over and couldn't get comfortable. A little better now I've had some paracetamol, but having some dizzy spells. Probably this cold virus still hanging around. Haven't felt this tired in a long time.

Thinking of you LittleLion. Please come back here and let us know how you go.

Yes Lion that was pretty much my thought pattern during the diagnosis process! I remember telling my friend that it was happening and trying not to cry. When I got my diagnosis I got spectacularly drunk and spent a few days licking my wounds but life goes on. I had some propananol from the GP for panic attacks which helped during the diagnosis process and diazepam to get me in the MRI scanner. Maybe have a chat with your GP.

Fortunately it looks like I won't have to wait too long as I've been booked in for an MRI on the 18th March. I was expecting to have to see a consultant and go through various questions and other tests before getting anywhere near an MRI so this is good news.

Hey all.. wanted to say hello and maybe get a little advise.

Last August I started having fits. After an MRI to see what was going on they found lesions on the brain. I was having so many fits that waiting for an NHS appointment that I went privately to the national neurological hospital in Russel square where the consultant looked at the MRI and said I had probable MS and definite epilepsy (consultant said MS can cause epilepsy in some people). MS hadn't been on my radar at all but I had been having fuzzy legs for a few weeks before the fits started but just put it down to 'one of those weird things'. The fuzziness has since moved into my arms and hands as well and is continuous with no let up. I also get shooting pain with extra fuzziness/electric shock feeling down my legs and arms every time I put my head down.

Looking back I've had trouble fully emptying my bladder (tmi - every night I got to the loo 3 or 4 times in a row and have to push to empty fully).

I've obviously done a lot of reading lately.. and I feel pretty calm about it all .. kind of what will be will be attitude - I'm not sure if this is because deep down I've convinced myself I haven't got it. I've had the spinal MRI contrast and am waiting for the results at the end of Feb.

Not sure what I'm asking or why I'm posting really .. but one thing I wanted to know was when people say they have trouble walking / can't walk ... what exactly do you mean.. what is the feeling that stops you from walking ? When i walk sometimes the fuzzing gets so bad that my legs feel super heavy like blocks of concrete so I find it difficult to life them .. it's not painful as much, more very uncomfortable.

Hi @iNeedToEat - I apologise for not seeing to post earlier! Your description of ‘not being able to walk’ is spot on really - for me, anyway. My legs seem much heavier than they usually are. My left foot tends to drag a bit. Sometimes, it feels as if I have an unstable layer of pebbles between my feet and the ground when I walk, and after a short time my legs will simply run out of puff. The electric sensation when you bend your head is called Lhermitte’s symptom. (Bear in mind I’m just a MS person myself, not an expert, not I’m not diagnosing you.)

I hope you’re doing a bit better now a few weeks on!

@TheClaws thanks for responding. Unfortunately I was diagnosed with PPMS at my appointment this week. I am now waiting an appointment at the MS clinic.

I'm a bit confused to how I've got PPMS as it didn't think that could be diagnosed right away. Is it possible ?

Yes, it’s possible. MS is different for every person, and its progression is different too. All that means, essentially, is your disease pattern may not have any periods of remission. However you may have caught it early enough to be able to go on one of the amazing drug therapies available now - has anything been mentioned to you? With PPMS now, you’re in a much better place than twenty years ago! (FYI, I was originally diagnosed 22 years ago with RRMS, but in the last few years I’ve lapsed into SPMS). Good luck and come back here with any questions

@INeedToEat Sorry to hear about your diagnosis. How do you feel about it all? I hope you're able to get one of the amazing drug therapies @TheClaws mentions.

My problems began with a heavy right leg which has affected the muscles amd joints in that leg (they always feel strained and my knee clicks a lot) but there are days when I notice my right hand also feels weak and slow to respond, particularly when it's cold.

My MRI is this Sunday. I don't know if they'll be able to tell me anything straight away or if I have to wait till I get an appointment with the neurologist (which I'm still awaiting, it all feels a bit out of sync).

Every day is different, sometimes I barely notice anything and other times I ache on my right side (the hip and shoulder in particular ache a lot today) and I struggle to get out of bed because I wake up still tired despite sleeping heavily all night. I just want to know that if it isn't ms, what on earth is it?

Dh has been great but I haven't confided in anyone else I would normally as my family all have problems of their own to deal with (dsis who I'm really close to on the verge of divorce and having her own health concerns and my parents are already worried about her).

Have you seen this www.bbc.com/news/health-43435868

I would be surprised if this has widespread role out and if it were to be offered to those with early stage or limited disability.
I intend to ask my MS nurse about it when I see him/her in a few months time.

Please do. I did it just over a year ago, I had a different unsername then. It's made such a difference. My doctor said a year or two ago that there was only so long they could keep denying it. I'm really glad it's getting publicity.

Have been lurking on this thread for a good while, so am now "de-lurking." Interesting to read all your stories and if one more "well meaning friend" tells me about HSCT being a total cure, I'm going to smack them!!

It's not. Chances are you'll be left with some residual disability. I know people with RR, SP & PP who have done it. The aim is to stop progression, if you see some of the issues go that's obviously fantastic, but the aim is progression stops.

I have two friends who have done HSCT and neither of them felt it helped, one actually feels it made her far worse. Like all MS meds, I think some work better for some people than others do. I'm a member of the UK HSCT FB site and anyone interested in it should join and educate themselves. It certainly will have a place in treating MS but not enough long term data exists and the risks at present are high.

My partner has MS, you are all troopers and wondermums. :) 🌞
My partner has RRMS, is now on a mood stabiliser, takes a lot of cbd oil (and some psychoactive) alongside bladder antispasmodic and gabapentin. I've noticed a big difference in him since starting the mood stabilizer and cbd as he was very down before and his moods would be erratic. He still struggles daily with fatigue and pain. But is definitely managing better. He was dx 6 years ago. Early 20s.

Sunshineworshipper, is he on anything else for pain?I'd strongly suggest getting Vit B and D levels checked and topping up with supplements. I'd also recommend omega oils which should also help with mood.

Does anyone have experience with CHC appeals? My mum has SPMS and (DX 25 years and Alzheimer’s DX 7 years) and needs 24 hour care and can’t do anything at all for herself. She lives at home. CHC has been withdrawn. She is as you would expect in worse health that she was when funding granted 4+ years ago so this has been a huge shock. We will revive social care funding which amounts to about 20% of her current weekly care cost (trips won’t even cover the cost of basic personal care visits. I lost the first appeal. Any advice would be hugely appreciated.

*this won’t even cover the cost...

Hi, I had TM dx in 89, but despite other symptoms occurring after 6 weeks, the neuro refused to do other tests (lumbar puncture) and mris weren't common then, maybe didn't even exist? I recovered fully, with no treatment or medications, after about 3 years, but my life was in tatters - been sacked from my well paid ft job for bad attendance, and was far too ill to fight it.

Anyway, picked myself up, and started again, went to Uni a few years later, met dh, got married, had dd. Alongside pg, I started getting weaker, and had really frequent migraines, took 8 paracetamol every day of my pg until the last 2 weeks when they lifted but started again after a month. Continued to become more and more ill, until one day, when dd was a little over 2, I woke up with the right half of my body not working. DX only about 4 months later.

Have recovered greatly since then, but it's been almost 20 years! I had to stop working when around the time I was dx as I was so weak, and as dh said, I was "failing in my domestic duties", actually failing in any and every possible duty.

About 4 years ago, I realised that I felt stable enough to return to work, so found a fab job with some very lovely people who treated me with such kindness and care! Sadly, the office has been moved 500 miles away, so I am in the market again! A bit scared at 60 but I shall get into that Job Centre if it kills me!

I can walk a bit if I'm indoors, but use a mobility scooter outside, not least because I now get vertigo - I can fallonto falls and furniture inside but not in the street

Worst symptoms are pain and fatigue. Idon't much care if bits of me don't work or I can't feel them. I do mind that my brain doesn't think well anymore. That really pisses me off.

I don't know what DMD is?
I take pregabalin, propranolol, fesoterradine, dosulepin, and a load of other things for my heart, my thyroid etc. I rattle a bit!

Has anyone tried CBD?

Plankapple, there was a programme about it sometime last year, which followed a particular patient in the trial. I don't see why it wouldn't be rolled out, as even if it was only effective for 10 years, you'd do it wouldn't you? And it would save an awful lot of medication costs and an awful lot of other costs (not just carers, but all sorts of other costs too) and we'd all be able to work for 10 years more, paying Ni and tax and being conspicuous consumers etc. And even if after 10 years we needed to do it again - well, I would! 10 years of normal life? Brilliant?

And even more worth the while if it lasted longer.