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

chips thanks for asking - I'm doing ok actually, I seem to have got used to it, and even my hot flushes have died down (thank goodness!).

Also I can tell this relapse is remitting by the week, I'm soooo much more mobile than I was a few months back. Kick started by doing Jury Service in May and just having to walk around a lot more than I had been. I keep testing myself but it's weird, I'm a bit scared of it. Need to get over myself really.

Claire I have a hand you can hold. I was diagnosed in 2008 but only went on treatment last month, as I had a 9 year gap between relapses. I don't know that much about MS as I've pretty much ignored it, but so far so good.

Saw Neuro private last week (was a 35 wk waiting list on NHS for urgent appointment. Wants to do bloods, lumbar puncture and muscle biopsy.

Just had a phone call to say to attend neuro day surgery unit friday for lumbar puncture. Crapping myself. Any advice please. I have spinal stenosis will this be an issue? Had lumbar facet joint injections several times - is it similar?

Also starting at thread on this.

Hi Claire,

Good luck, I never needed a lumber puncture, so I don't really know much about them, my RRMS was diagnosed by MRI, TM first CIS, then MS confirmed after further relapse. Have you rang an MS helpline for support/advice? Have you been assigned an MS nurse, I was put onto her list before my diagnosis was confirmed, it did help. Wishing you lots of luck for Friday.

I got diagnosed RRMS after doing a research study for a university as a healthy volunteer in 2012 . Turns out, things I thought were normal aren't. Glad it happened that way although it was a shock. Had capaxone, tysabri and Lemtrada. Got on very well with Tysabri but my consultant wanted to have a patient on Lem, and I was her ideal candidate. I still work full time as a paediatric nurse on a very busy ward. Physically hard going sometimes but I just get on with it. My colleagues have been amazing.

Hi can I join? I'm still in linboland but thought I'd ask - does MS lightheadedness ever go? I've felt like I'm on a boat for nearly 5 months now. If I do have MS it'll likely be the RR type as I had a similar episode 11 years ago. All the sensory tingling, twitching etc has gone now after 4 months, but the dizziness remains.....yuck

I forgot to update after my LP. Heres a link to my thread.

www.mumsnet.com/Talk/_chat/3032747-Advice-re-Lumbar-puncture-crapping-myself?msgid=71934327

They want to try again in Oct under X-ray guidance. I don't know what to do.

Handhold here Claire.

I have RRMS (aggressive form), diagnosed in 2005. Tbh it was a relief because everyone used to call me a hypochondriac, and in the end I really started to believe that everyone was like me and I was just making a mountain out of a molehill.

I put off treatment whilst we tried for, and had my DD. My neuro started me on trial therapy of Mitox (Mitoxantrone) in Jul 2007, and Copaxone in Oct 2007. It was discovered I was allergic to Copaxone, so I started another trial drug at the time, Alemtuzumab (called Lemtrada now, but was called Campath 1H then), in Jun 2008.

I had an MRI in December and saw my neurologist yesterday. It has been confirmed that I haven't relapsed (which I knew), and the MS hasn't progressed at all (which I didn't know), since 2008.

This is unheard of for me, as beforehand I was relapsing every month. Deciding to have the treatment was the best thing i've ever done.

(btw I am a wheelchair user, but this is NOT because of the MS - LONG story - but ultimately the MS has kept me in it as it 'got me', whilst I was off my feet).

Hi and welcome to all our newcomers

Marscapone lightheadedness should ease, but if it doesn’t, you might need to look into medication. It is awful x

TheClaws - thanks, I can't wait. The ENT consultant said there's nothing to take for it (I was taking stugeron anti motion sickness otc pills but he said they were bad to rely on and I should stop). I have stopped, as have balance and hearing testing tonight and the pills would distort the results.

Also have a brain MRI tonight - I'm going to be an exhausted mess at work tomorrow!

If I am diagnosed will I be offered dmds? Or is there a bunfight for them like there is in other areas of the NHS (funding etc)?

I’m in Australia, so not sure about the NHS - but I’d hope you wouldn’t face many hurdles to gain access to DMDs. After all, you would have better outcomes on them, so it is is the NHS’ interest to do so. But it depends on the individual as to whether you would benefit. Your doctor would know best.

Had a whole bunch of tests yesterday - hearing and balance tests to check the inner ear balance mechanisms. Plus brain and full spine MRI (not sure if contrast was used - how would I know?)

So I guess now I just wait until I'm given a new consultant appointment. The MRI nurse said the images were a very clear good quality and I might get a letter with the results. Bit scared of getting a letter with the result if it's not good. But will have to go with it I suppose.

The contrast would have been given to you as an injection in a vein in your arm or hand. You would know if you'd had it, I should think. In my experience, letters with results are generally quite factual/vague so you probably won't know much detail til your follow up anyway. Best of luck.

Best of luck Marscapone!

Not heard yet, 11 days later. How long would private MRI results take if it was urgent, like a tumour or something? Not sure if the radio silence is because the tests were clear so there's no rush, or because they've found something and can't decide what it is! Scary to think someone else might know my future by now.

The waiting is really hard- I find trying to keep busy the best way to deal with it. I'm not sure about private but I have waited over 6 weeks for MR scan results on the NHS. If there was something really urgent I'm sure you would have heard already. You could give your consultant's secretary a ring to see how long the results are likely to be.

Well I got a letter saying all MRI brain and spine, balance and hearing tests were normal. Absolutely amazed. I guess this rules out MS and neurological nasties, given that my first symptoms were 12 years ago and something would've shown up by now.

Am now waiting to hear whether I need a follow up appointment.

Very glad to hear the results were clear for you Marscapone. However I do know it is frustrating at the same time as you just want an answer as to why you feel so awful! I hope you find that answer soon

Good to find a place with people going through similar shit.
I was diagnosed with rrms 3 years ago but it took a while to get the diagnosis!
The lumbar puncture done to confirm diagnosis caused all kinds of problems and ended up disabling me. I was slowly getting back to some degree of normal and my MS was stable. I just had a little numbness on the balls of my feet.
I wasn't on any medication as I felt my symptom were not severe enough and seemed to be ok dealing with it using vitd3 oil and dietary changes.
I've recently been floored by a flare up starting a few months ago and now need to use crutches, wheeled walker in the house and a wheelchair when I go out. MS hug, incontinence, fatigue, pain, spasms blah blah blah.....yeah it sucks but I'm just getting in with it.
My recent MRI showed lots of new additional lesions on my spine and a brand new one in my brain.
I'm due to start Tysabri shortly. I'm shitting my self. I have to have my first couple of infusions in the acute observation ward as I never respond well to medication and have lots of allergies. I'm scared of the drug and scared of not taking anything and having another relapse and ending up worse.
I try to stay positive and be grateful for the things I still can do, not mourn the things I can't. It's a big adjustment but I think I'm doing ok.

Happyhippy45 that sounds like an awful relapse. I haven't had Tysabri (had "la-la-la-my-ms-is-the-nice-kind" no meds, followed by dawning reality Tecfidera and let's nuke the mofo Lemtrada). However, I have watched and chatted to other MSers as they had it and they were all delighted with it. I do hope it works out for you; it has great results for many people.

I know what you mean about trying not to mourn the losses, it is so hard though. My main discovery has been that although I might have rubbish days (or weeks or months), I will feel better eventually. I don't mean that I'll get better, just that I have had days in the past year when despite being more disabled than a few years ago, I am actually happier than I was then!

for when you start, hope it all goes well.

Can I join as a latecomer? I was diagnosed 2012 but realised early on my symptoms were sowing early 90s. For the first time since diagnosis I have actually cried. Don’t know why I gues it’s just finally hit home

I also have MS and accepting the dx has been hard, for me it’s is accepting that your life has changed unexpectedly and life is a lot less predictable now it’s almost like a grieving process.

It took around 3 years for me. So much has changed in my life but I know I need to keep positive, moving forward and taking better care of myself and my health. I am still the same person and it is so important to remember that.

I think the first thing an hcp told me after I was diagnosed was "don't assume everything weird with you is MS". I found that really helpful.

For me, the journey changes all the time. I’ll have long periods of stability (thanks Tysabri!) then a symptom will crop up to remind me that hey, I’m not quite normal. But then no one really is. I’ve lost a fair amount of function most people take for granted - working, driving, talking easily, even drinking - but I still have a great deal, and I’m happy and supported.

HappyHippy I’ve been on Tysabri for many years now - I think six or seven? It’s been wonderful for me. The infusion is easy and I don’t feel sick afterwards. I am JC virus positive but made the decision to stay on the protocol as it was having such positive effects on me.

A question for you all really. When you finally clicked that something wasn't right, prompting you to visit the GP, did you 'know' (I.e. strongly suspect) it was ms? How long did it take for you to be diagnosed?

I went to the gp yesterday, because for the past few weeks I've noticed my gait has changed and the limbs and muscles on the right side of my body feel under pressure. Looking back I first noticed it at the end of last Summer and tried to adjust my running style because my hip was aching and I ended up with pulled muscles in my right leg. But looking back further than that, to my early to mid 30s (I'm 39) I woke every morning with pins and needles in my left arm, and when it wasn't pins and needles a limb would be completely dead, like I was lifting a dead person's hand/ arm because I had no feeling at all. These symptoms disappeared and I'd assumed it was carpal tunnel syndrome as I'd recently given birth.

The hip ache and heaviness/ weakness on my right side returned around Christmas time and I've also noticed that my hands/ fingers on my right hand don't work properly when I'm cold. Last week I was on the phone to my mum and my right arm went really weak, I became dizzy and vision became blurred (right eye only). I've had a blood shot right eye for several weeks now.

I've obviously read up a lot. I had glandular fever when I was 18. I'm in the right age bracket and female. My emotions have been all over the place the last couple of days, trying hard to stay positive.

The GP was clearly concerned, did some balance tests, ordered blood and urine tests and has referred me to a neurologist. He said it was 'to rule out ms' and that they 'may want to send you for an mri'.

I've got it, haven't I? I now also have a 14mo dd and I'm more than anything terrified I've given this to my children. I don't want to be a burden on them in the future.

My test results all came back clear, so now waiting for my appointment with the neurologist.