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

Hi everyone. I have seen I neurologist today fully expecting him to think I was a time waster. Gave him my symptoms and after an examination he has said he thinks it's ms. I have to have a brain and spine scan and possibly a lumbar puncture. Last summer I was convinced it was ms, given how I was feeling and what I,d read about it, but I,ve felt better since so wasn't expecting this today. I asked should I be concerned as I wasn't sure if he was being over cautious but he told me "I am 99% sure you have ms, please bring someone with you to your next appointment as I,m sure I will be giving you a definite ms diagnosis. I,m 40 and feeling petrified.

I was also 40 when I was diagnosed with RRMS. Does your Neurologist think it’s RRMS or another type?

It is a big shock I know, and it took me quite a few years to accept the diagnosis.

But there are some positives from getting a confirmed diagnosis, being assigned an MS nurse, starting a disease modifying therapy etc.

It’s honestly not all doom and gloom OP. You just need to make adjustments to make your life as easy as possible. Feel free to pm me if you have any questions.

I,m not sure to be honest I honestly wasn't expecting it even though I had suspected, thought I was being a hypercondriact. I haven't spoken with anyone yet, haven't told my family yet. I hate worrying my parents. I keep thinking what if he's wrong, I haven't had a scan or anything yet, but then thinking he wouldn't have told me it is ms if he wasn't sure, he obviously knows what he's talking about. I,be been reading positive stories though and I,m quite a positive person. And at the moment I,m feeling fine. I really don't know what to expect.

For what it's worth, I've been diagnosed for about 15 years now and, apart from a few close friends, I haven't told anyone - including my elderly parents. The worry would be too much for them and, in turn, would cause me stress worrying about them being worried!!

MS is not a death sentence - my symptoms are mild and manageable on a daily basis. I don't take any meds apart from muscle relaxants for stiffness in my legs. You'd never know I had MS if you saw me.

Take time to digest whatever you're told and don't tell people before you're good and ready.

Thank you, I,m feeling much better about everything today and appreciate your replies and advice.

Flatwhite, I hope you won't be joining our little club. If it's a definite, then you need to get on to a disease modifying drug ASAP. Try to get on to something that's pretty effective, Tysabri or Lemtrada. Damage done in the early days has a nasty habit of hitting back down the line.

I was on the crappy injections when I was first diagnosed as there wasn't anything else and I now suffer from a lot of muscle and nerve pain. My walking is ok-ish, but only over a very short distance. I wish I could have had Tysabri available to me from day 1.

Hi I only found this page even though I'm on the site a while
I am diagnosed since 2003
Doing pretty well considering
I was on Rebif copaxone but got sick of my injection site reactions so after refusing Gilenya twice I started on it
5 years on it soon
My worst symptom is the dreaded fatigue.
Nice to meet you's all.

Hello everybody! I had forgotten about this thread . Welcome to all the new club members, I'm sorry that you find yourselves here.

I see that the last time I posted I had just started taking Tecfidera. I'm off it already! One of the requirements for renewing the prescription is a blood test every 3 months, they check blood cell counts and liver and kidney function. After 6 months of Tec I had grade 3 lymphopenia; my lymphocyte count went from 1.8 before I started the Tec (normal is 1.0-3.5) to 0.7 at 3 months. After 6 months I'd dropped to 0.4. I came off the Tec two days after the last blood test. Now I do monthly monitoring; after a month off the Tec I am back up to 0.7 which I thought was a great recovery but my neuro says the recovery is not linear, it could drop again and he's had patients take over a year to recover lymphocyte counts after taking Tec . So, not currently on any DMD. If my counts continue to go up we will try either Gilenya or Mavenclad. On the bright side, lower lymphocyte counts means less likely to have a relapse!

To the person asking about "not being able to walk": my first ever relapse (with no prior symptoms!) caused me to lose the ability to walk. For me it felt like my legs were very heavy and I really had to concentrate to get them to move. I also lost the feeling in my legs so I couldn't really tell where they were or what they were doing. I gradually regained the ability to walk but the loss of feeling lasted longer so I would regularly walk right out of my shoes and not notice because I couldn't feel the ground. It was all very surreal.

Subsequent relapses have not been quite as intense so walking just becomes more difficult and I really have to concentrate on moving my legs and coordinating the movements so that I actually go somewhere.

When I was first diagnosed I was almost elated to have MS; over the course of a week I went from normal to not walking. I thought I had a tumour on my spine so MS was awesome next to that!! It's two years now and I am no longer elated although last time I saw my neuro he was late for our appointment and he explained that he'd had to tell a young woman that her husband had had a catastrophic stroke that he likely wouldn't recover from - and so there was the reminder that there are worse things.

However, understanding that there are worse things doesn't stop me from getting frustrated and pissed off with life!! I don't think I have totally taken on board the diagnosis yet....

Hi all, I've read the thread from the start and am glad i found it.

Will tell you about me- I was 40 in January and have suffered from pain since 2005, severe pain, been on every painkiller under the sun but symptoms worsened after a family tragedy and then in 2014 I almost had a nervous breakdown due to 2 failed school appeals for my ds who has ASD.

After much research it started to appear that I had fibromyalgia. Doctors were not very supportive and were quite dismissive of fibro ( have heard this can be quite common ).

Symptoms worsened, severe fatigue being the worst after the pain and then becoming extremely scatty and forgetful.
2 years ago I was also diagnosed with OCD, bi polar and anxiety.

Last year I saw a different doctor who had done a lot of research into fibro and was convinced that's what I had and by chance I ended up at a private hospital for diagnosis via the NHS.
I was diagnosed in November 2017 and cried and cried because I felt that someone had finally believed me.

Family not very supportive, they think I'm a bit of a hypochondriac which upsets me. I stay away from Dr Google and take most advice from MN.

Anyway ( apologies for essay ) a few months ago I started feeling weakness in my legs, felt like I wasn't walking on the ground like I was kind of floating, felt quite detached from my body whilst walking and mentioned it in conversation to a friend who said it sounded like the early signs of MS as her husband was the same.

Around this time too I started becoming increasingly forgetful ( hid money and still can't find it ) for example and more recently, dizziness, on and off.

Any thoughts? I don't know all of the lingo on here and I take quite a lot of tablets for the pain including codeine and pregabalin but nothing works.

I just don't feel right. Scared I have something worse than MS as i am a worrier but when I go to the MS society page I tick so many boxes.

Thank you so much if you read my essay! Any advice appreciated, Zoflo.

@Jux

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.

I agree. We're very fortunate that we have money in the bank so if it ever rears it's ugly head again I can again do HSCT. I wouldn't hesitate. 100% I would be in a wheelchair now if I hadn't done it.
I met with a Dr who had been doing HSCT on MS patients since the early/mid 90's (it's really not a new thing) and he does regular followups with those people and they are all still ok (MS/Relapse free) so there's no reason to think it only lasts 10 years. But if it does, I'll do it again in a heartbeat.

When you think of the possible side effects of the offered drugs, pml for example, to me it's a no brainer. Why wouldn't you offer a better/permenant solution. It's money isn't it? A US HSCT friend was offered Tysabri even though she was JC Postitive, WTF, they could have killed her. Thankfully she said no and went with HSCT, which has worked.

My doctors think within 5 years the evidence and news of it is going to be so strong they are going to have to offer it. I really hope so.

An update from me. I had my mri six weeks ago and the report still isn't back - I've been told they are taking six weeks. My appointment isn't for another two weeks and the communication has been appalling. This has been going on since end of Jan now. I actually feel a lot better than when I was prompted to go to the gp but now beginning to think I've been imagining things! I still haven't told my family - there's no point if I'm going to be told there's nothing wrong.

A bit unfair to say being JC+ and on Tysabri "could have killed her." I'm JC+ and on Tysabri since 2001. All effective MS treatments can have very serious effects. ASCHT has had several deaths, people need to read up on all the options and decide which risks are worth taking for their own circumstances.

I agree, cliona72, I am also JC positive and on Tecfidera, any effective DMT has risks, it is a trade off, against the risks of the DMT and disease progression. I know what I would prefer, but it may not be the right choice for everyone.

Hi all ..

Finally had my nero appointment yesterday to talk about DMD's. I've done a lot of reading since my recent dignoses of MS but feel clueless about these DMD's. The side effects all seem so bloody scary - almost wish I hadn't read them.

So I've been offered Lemtrada or Cladribine.. anyone have any views on these ? How on earth am I meant to decide !

Hiya, I was offered Lemtrada or Techfidera. The side effects of both terrified the hell out o me. Lemtrada seems to have amazing results but not for everyone. I guess its also down to how risk adverse you are?

I am very risk adverse, so after a long chat with the MS Nurse after seeing the consultant, she actually listened to me, listened to my fears. And made a suggestion she felt would be a better fit for me which was Plegridy. Sadly I think Plegridy is one of the ones they are trying not to offer to new patients due to the cost.

For me Plegridy fits, I have been on it for 18 months, the side effects for me have been tollerable and I have had no relapses (although I wasnt having many relapses before either - but at least I feel I am trying to combat it).

In the end, its a personal choice, what suits one person does not suit another. Read up. Join a few of the facebook groups for those treatments, they can give you the warts and all of each choice.

Good luck and I hope you find a choice you are happy with (and some people choose not to treat - the choice is really yours).

I agree DMD’s are a minefield, all have side effects, personally I chose to take a DMD, Rebif originally then switched to Tecfidera which I am still taking.

MS trust produce a guide to DMD which I found helpful, to me it seems logical to think that if the relapse rate can be reduced it will help long term with disability progression.

I would rather take my chances with a DMD than without.

Thank you both.

It's such a difficult desision ! The Nero ruled out techfidera, as he felt it wasn't aggressive enough. I've had 3 relapses since it all started last August. MS has also given me epilepsy and I'm worried DMD's might make that worse.

I'm a bit of a 'out of site, out of mind' kind of person. Which I think translates to very risk adverse. I'm not a gambler. Though I think that's through fear.

I'm so unlucky with health stuff.. I've convinced myself that I will be one of the % who react very badly to any of the DMD's!!

I am always terrified of side effects and spent the first few days shaking in case the worst happened. So I can understand your worries. There is no easy answer tho - I wish there was.

The only way to know is by trying a DMD, I had problems with skin reactions on Rebif stopped that and started on the Tecfidera, I was ready to give up after two days, flushing rash from head to toes, very nauseous, decided to try it for one more day and I had turned a corner that was nearly 3 years ago.

Another friend of mine stopped Rebif and started on Tecfidera, she has had NO side effects at all! So everyone is different.

To have 3 relapses in under a year, personally I would want to be on a DMD as soon as possible. But I can completely understand how you feel I was very scared at the prospect too.

My MS nurse helped me to decide, one of the things that stuck in my mind was her saying to me, to have MS and not take a DMD, is like driving down a steep hill without any brakes. I had two young children at the time, and felt the risk of the drug compared to the research of the drugs performance and claims were a risk worth taking.

Wishing you luck Noboozeforme and everyone else going through these difficult decisions.

Hi. I was diagnosed with RRMS after volunteering for a research study, and it was picked up on the MRI done as part of the study. I was gobsmacked, but in hindsight things I thought were normal obviously weren't. Had capaxone, which didn't work a d was still relapsing. Then tysabri, which I really liked. But my consultant wanted a guinea pig for Lemtrada. Which has also been great. Still working full time as a peadiatric nurse. Last proper relapse was four years ago.

I had no side effects from any of the drugs I was on.

Hello to everyone new to the board!

It is hard making the decision about what medication path to take. In the end, it is a personal one based on:

your clinical status
your finances (if the medication isn’t covered by your insurance and/or the government)
your age,
your family circumstances
other medical conditions and medications
your lifestyle
the amount of risk you are prepared to absorb.

That list is just a start! It is clearly so complex and deeply unique to each person, no-one can be criticised for a choice they make - or don’t make - on this issue. My advice is to research as much as possible - not simply on manufacturer sites or on pharmaceutical-sponsored pages - but on MS Society pages or similar. And ask here, of course!

Toddler. Simular experiances for me. Had an MRI because.of the fits and got told I had MS. I'd actually gone private at the time because the NHS (which I love and am very grateful for) was quite frankly, rubbish. I'm glad I did as I've now gone back to the NHS seeing my private Nero from the national neurological hospital in Russel square and feel I am getting a better service there than I would at my local hospital.

I'm currently leaning towards Caldribine - due to less side effects but im also aware that the sussess rate is lower. I think im fine with that.

Plegridy is pretty much a waste of time. The thinking in MS now is to treat with a highly effective DMD ASAP, now, I wouldn't consider anything less than Tysabri, Lemtrada or Mavenclad if I were to be starting again.Damage done in the early days can really impact on disability down the line.

Thanks for the vote of confidence Cliona in my choice. Luckily the folks at Addenbrookes, the place who trialed Lemtrada, had a slightly more open mind that Lemtrada isnt the right option for everyone and advised me n Plegridy.

No DMD works for 100% so nothing is the right answer for everyone.