Anyone with MS want to chat

[Tuesday40]

Hi I’ve recently been diagnosed with MS and wondered if anyone wanted to chat? It’s still a bit raw so don’t feel able to talk about it to people face to face.

I’ve not started treatment yet and feeling worried about what the future holds. Be great to chat to people a little further along than me, or equally hand hold with people going through the same thing.

Hi, no still no news, was hoping that a good thing?!

Yep, I work in hospitality so it’s fairly standard, still awful though. Currently looking for something else as owner of the business has made it clear he wants me to go. Slightly afraid of that prospect!

thinking of you all too!!

I'm sorry to hear your news. It's so tough to hear that diagnosis. My DH has RRMS and was diagnosed almost 10 years ago. He was quite depressed when he first fell ill and not surprising because there are so many fears and worries. I would encourage you to speak to someone - have you seen a nurse at the MS clinic yet? Or maybe a local or online support group? It's also good talking to friends and family but sometimes they don't really understand so it's good to have both sides of support.

Here are some things that help my DH stay healthy;

• keeping a low fat/unprocessed diet. He cut out gluten and dairy as well as fatty meats (mostly red meat) and reduced his unrefined sugar intake. There are a lot of diets on the internet that you can try. It's hard at first because you need to read the ingredients of EVERYTHING but once you get the hang of it it becomes normal. It's easier if you cook things from scratch.

• exercise as much as you can even if you're not feeling great. This helps your nerves create new paths through your body and so in theory it helps your movement stay strong. My DH hands are effected a lot and he loses mobility when he has relapsed in the past so he does finger exercises every day to help his brain create new pathways.

• rest especially if you have relapsed. Sleep is your friend. But most importantly make sure that you rest your mind. Watch a lot of comedies and do what relaxes you if you can even if that means going for a gentle walk to clear your mind and get you out the house.

• for tight muscles - stretch! Try to do this for 20 seconds each stretch. You don't need to push yourself just gentle stretches will do. Also have a bath in Epsom salts - the magnesium in them helps to relax your muscles.

• take vitamin D and in the summer get out in the sun as much as possible! My DH gets run down in the winter so it its possible try to take a sunny holiday late November/early December and soak up some rays (we've actually never managed this but I always thought it would be a good idea)

• don't let that bastard MS grind you down! Stay positive and make sure you still get out the house and see friends and family.

I'm not sure this advice will be helpful. Everyone with MS is so different and sometimes you can do everything right and still get unwell. If this happens try not to be disheartened. It's hard but you can live a full and happy life dispite the heartache that goes along with MS. It's hard but don't give up. Stay strong xx

My friend was diagnosed in her mid twenties with relapsing remitting. Tried lots of different treatments. None of them worked for long. But she is ‘fine’ (10 years down the line) and now has 4 children.

I know the hardest thing for her was not knowing how long she had before she’d end up in a wheelchair (her biggest fear) or even if she would. The lack of crystal ball was torture.

I think you just need to be kind to yourself and take it day by day xx

Ps. Whenever my DH has relapsed it has taken him a full year to feel strong again but don't let that dishearten you. It just takes time for the body to heal and find new ways of coping. Be gentle with yourself and allow yourself time to rest and try to enjoy watching trash TV more than usual. When he has relapsed he says it feels like everything is out of reach and impossible but since his diagnosis he has run 2 half marathons which is incredible. Be patient when and if you relapse because it might not be forever.

He was 22 when he first fell ill and is now 32. He hasn't had a relapse for almost 5 years. He still gets symptoms of MS when he is tired and has to rest but has had no active disease for 3 years running.

I have MS and on tecfidera. I did try Rebif first but it made me feel too unwell. I find tecfidera ok apart from flushing and my blood counts are low so I may have to change.

I was diagnosed out of the blue really when I was 36 3.5 years ago when I became unwell over the course of a week and ended up in hospital. I then learned that it had been flagged on an MRI I had had in 2007 and my symptoms go back to 2001 after I had glandular fever.

I’m generally pretty well. Go to the gym every day, run, cycle etc but there’s certainly a lot of issues no one sees.

Look for your local MS Therspy center. I go to oxygen therapy once a week. It took a while for me to get my head around it enough to go in as there’s a lot of very unwell people there and if I’m honest I do tend to go in, have my treatment and leave, but I do think it helps with fatigue.

I have some good news to share, recent MRI scans showed no new lesions, yay! I can stay on Tecfidera, that seems to be working well for me, I still flush occasionally but other than that it’s fine, lymphocyte count have also been ok, well with range. Been on Tecfidera for 4.5 years.

Great news @Roselilly36 must be great to know it’s still working for you.

Thanks all for the advice above. Feel like I’m slowly getting there. On my DMT made big improvements to my diet. Just got to get the exercise sorted now!

Hi OP I have RRMS diagnosed 2012 it takes a while to get your head around it

Hi @Tara336 yes slowly but surely. Still not ready to tell anyone about it in real life other than family but I’ll get there.

How have you got on since you were diagnosed?

@Tuesday40 I’m ok, I think I was relieved to be diagnosed and know I wasn’t going nuts, I’d had so many weird things happen (which I now know was classic MS) my attitude was “right I know what’s wrong now what do we do about it”. I’ve been on 3 DMD and may/may not try a 4th I’m not sure what I want to do yet. I’m not so well at the moment and if I bothered to tell my nurse I’m pretty sure she would confirm a relapse but I prefer to try to ride things out rather than take steroids

Hey @Tara336 sorry to hear you’re not well. I know what you mean about the steroids, hope whatever symptoms your having resolve quickly

@Tuesday40 thank you, it will sort itself out eventually just drives me nuts when it reminds me I have it. I’ve never taken steroids as it seems a bit hit and miss whether they will work and then you have side affects to contend with as well, to me it doesn’t make sense, but I understand why others take them.

Hey @CheekyFucker and @Mixitupalot how are you baring up with the wait for your MRI results. Been thinking of you both and hoping for positive outcomes for you

Hi - also diagnosed (first time 21, second time 33 and just a few weeks ago).

Tuesday - I have a question - I am curious to know how you have been diagnosed so quickly if you are in the UK? Would you mind sharing the name of the consultant / hospital trust you've been seen by please? I'm at my wits end due to a work issue and being unwell - I was urgently referred to a leading specialist and it took six days to have my urgent MRI scans done and another ten days to have the LP (also put through as urgent) and then I was told the full LP results take around two weeks. Honestly would like to move to a consultant that is happy to diagnose in a day and prescribe DMDs without awaiting further relapses or MRIs and thankfully in a position to do so but just need to know where the care is being expedited please? May mean I can keep my job.

I'll catch up properly with the full thread. Hello to everyone else.

Hi @NaturallyEden sorry to hear you are having a tough time accessing treatment.

I don’t want to say exactly where I am, but yes in the UK. I think I got diagnosed so quickly as my symptoms were rapid and acute and very similar to another condition that requires immediate attention. Also I presented an A and E and was admitted straight away and basically they kept me in while they did all the tests. I did want to go home but strongly advised to stay as in outpatient diagnosis would take months, months for MRI, then another wait for LP and then another wait for appointment which is I guess what you are experiencing?

So it was good to get diagnosed quickly, wouldn’t say my after care has been great though and my consultant isn’t an MS specialist so think it’s not always going to be plain sailing.

Do you mind me asking what your symptoms are? Also it might be as well to read up on treatment options and so you are in position to make your decision as soon as you are told what they are offering you. In my experience they told me the drugs in one appointment then had to go back a few weeks later with a decision. So you could cut that time down by doing your research first.

Are work not being supportive? Have you been signed off by your GP?

My symptoms are pretty varied, vision loss, bladder issues, loss of balance, left sided weakness, seizures, slurred speech and spasticity in my legs.

I'll be having HCST.

That’s great you’ve already decided. Are you having that on the NHS or are you self funding?

Hi hope I can join in .I have ms I'm female 42, 3 kids, I struggle every day with it I've had lemtrada just never ending

Hi @Del250508 of course you can join us.

Must be hard work with 3 kids if you are struggling, do you get any help with your kids. Have you got a partner/family support to lighten the load a little?

Sorry to hear you are struggling. When did you last have lemtrada?

I'm married which isn't easy, kids hard work, had lemtrada june 2017&2018 it has left me feeling weak and floppy, family help a bit , they're not interested really. What type do u have? I'm rrms ?spms . I will reply back asap Kelly

Sorry to jump on. Am awaiting head and spinal MRI results. Haven't dared voice my fears as these are to assess degree of scoliosis but have had the following over the last five years,: burning / tingling / aching sensation up forearms, feeling of a blood pressure cuff on left shin, feeling of insects crawling on scalp, pressure like a brick between ribs, tightening around bra line area (once I actually had a tightening where I couldn't breathe, felt like a minute was only seconds). Intolerance of heat especially on face, feeling like a warm breeze evaporating water off my face, then distinctly August last year add in tingling from left eye down across cheek which has slowly but surely set in to be pretty permanent across temporal bone and down sides of hairline (ramps up a notch when i sit down or lay in bed). And pain that has started and quickly worsened from fingertips and toes (feels burning -m: aching - like holding the steering wheel on a sub zero morning,)

Sorry for long post but any ideas if I am being a worry wart about MS and perhaps this could all be to do wi bulging disc / scoliosis.

Hi @Pickofthepops the waiting must be so hard. Do you know how long you’ll have to wait? It’s so tempting to google and diagnose yourself - hopefully you’ll get some answers soon.

I’m new to MS but from what I can gather MS symptoms often very similar to other conditions which is part of why it can be difficult to diagnose. Got my fingers crossed that you get good news when you get your results and that it’s not MS

Hello all, I have suffered from severe anxiety for past 10years and also had autoimmune disease lichen sclerosis for 18yrs. I'm now really concerned that I might have ms. About 2yrs ago had twitching a over my body lasted for few months had MRI came back clear. Was told twitching was down to my anxiety. For last few weeks had really stiff right hand finding it hard to write and type. This is now better but for last five days have had numb foot and this has now spread up my leg to just below my knee. Have also had both feet either freezing cold or burning. Went to gp yday get said could be start of ms but I need to wait and see if leg gets better and if I get any further symptoms before he would consider a referral. My anxiety is thru the roof. Sounds weird but I always had a dread of getting ms and fear now this could be a reality. Looking for advice and some hope that treatment for ms is much improved and it's not as bleak an outlook it once was. I have 2kids under 10. Sorry for long post but at moment I'm feeling almost suicidal.

Sorry forgot to add had numbness on one side of my face which has gone and numbness down my arm running into my hand this last week which had also now gone. All numbness has been on same side of my body. I dont know if having one autoimmune disease makes you more susceptible to another
Also thinking my excessive worrying.g and stress could have cause ms. I have read ms can sometimes start after severe stress.

Hi @daisygrills sorry to hear what a tough time you are having. I’m not an expert in MS by any stretch of the imagination but a clear MRI is really positive. Did they use contrast. Have you thought about calling the MS society or MS trust. Am sure one of them have a helpline. Also if you are still concerned or anxious definitely go back to GP. Don’t suffer alone with this worry x