MS in all its glory

Lollipops23

I've been battling a particularly nasty bout of tonsillitis this week- antibiotics and all.

My question is- has anyone found their symptoms get worse when they're ill? This is the first time I've been properly ill since diagnosis and I've found my numbness is worse and there's a small bit of pain in my hand to go with it.

femur61

Lollipops23 wrote: »

I've been battling a particularly nasty bout of tonsillitis this week- antibiotics and all.

My question is- has anyone found their symptoms get worse when they're ill? This is the first time I've been properly ill since diagnosis and I've found my numbness is worse and there's a small bit of pain in my hand to go with it.

Yes, this is a common trait with me. My neurologist said when we have a chronic illness but usually function above our baseline. When we get ill, we are plummeted to our normal level and below it. Mind yourself and it does take a little bit longer to get better. I get the flu injection every year, avoid as much stress as I can even things like going on a long car journey I would rest afterwards.

H hopefully in time you will return to normal, but it does take a little bit longer, and make sure people around you are aware of this.

Salmotrutta

Lollipops23 wrote: »

I've been battling a particularly nasty bout of tonsillitis this week- antibiotics and all.

My question is- has anyone found their symptoms get worse when they're ill? This is the first time I've been properly ill since diagnosis and I've found my numbness is worse and there's a small bit of pain in my hand to go with it.

I think it's very common. Infections can worsen existing symptoms and sometimes cause new ones. Touch wood I've had very few colds the last year or two, but am under strict instructions to go to GP and get antibiotics if I do come down with anything, as being on treatment means reduced immune function, longer to recover and more chance of relapse. I find the numbness worse when I'm very tired too, and my leg gets very twitchy. It should be just temporary and resolve/improve when you get over the tonsillitis.

Get well soon!

Sunny Dayz

Lollipops23 wrote: »

My question is- has anyone found their symptoms get worse when they're ill? This is the first time I've been properly ill since diagnosis and I've found my numbness is worse and there's a small bit of pain in my hand to go with it.

My other half has MS - and he notices that if he's coming down with something his pins & needles act up a bit a day or two before.
Like Femur61 he has to get the flu jab every year, but that was even before he was diagnosed with MS, he used to miss so much work every winter.

Lollipops23

Have defo had quite a bit of joint/ligament pain in the last week. Have managed it with ibuprofen when it's been bad, but really hope it's only temporary!

embee

So, I ended up in Beaumont again with another relapse. It was not a bad one but I had severe optic neuritis and facial numbness. Am having trouble with seeing the colour red properly. I'm only on tysabri 10 months and my neuro says that tysabri is not proving effective. Am being changed onto Lemtrada after a minimum eight week washout period. Am very afraid of not being on treatment as I'm worried I'll go into a big relapse. The fun never stops with MS!

ash23

Oh embee I'm sorry to hear you're having a rough time. If it's any consolation I had very bad optic neuritis in one eye a few years ago and regained 100% of my vision.
It will be scary not being on anything but if Tysabri isn't working then there isn't much difference being on it or off it. Hopefully Lemtrada will prove more effective for you.

embee

Am on the way home from an ophthalmology appointment. There is extensive scar tissue in the eye itself and the doc said whatever improvements I get won't get me back to normal vision. Just hoping that the other eye doesn't throw in the towel too!

byhookorbycrook

Blast.

embee

Was up in Beaumont this morning for a bladder scan. Was walking out and I ran into my neurologist Dr Costello in the corridor. I'm in week three of an eight week tysabri washout but she wants to admit me next week or the week after for iv steroids, to try to counteract any brewing relapse from not being on meds. She said I should be cracking on with Lemtrada around July 13th, which is eight weeks to the day since I would had the last tysabri infusion. I love my neurologist, she's so proactive.

byhookorbycrook

That's great news! We had our 1st Lemmy in our centre last Tysabri out. I think VHI are still refusing to fund it at present in ours, anyhow.Stupid when you think of how much it could save them down the line.

Lollipops23

Was in for my first annual check up last week- my symptoms are officially classed as stable

Will be in for an MRI in the next few months to check lesion growth etc, but I'll cross that bridge when I come to it.

For now I'm laid up with a particularly nasty chest infection. The immune inhibitors are a double edged sword, aren't they?

embee

Was admitted to the Neurology Day Unit today for my first dose of pre-Lemtrada steroids. Halfway through the eight week washout. Today was my scheduled tysabri day but obviously I didn't have it. Back up tomorrow and Friday for more steroids and the JCV test which needs to be done. I've been JC negative each time but they're said that can change at any time. If I'm JCV positive then there is talk of extending the washout period to 12 weeks in total., I'm only four weeks into the washout as it s! Let's just hope I'm still JC negative! Hope ye are all well.

ash23

Sorry to hear some of you are having a rough time

I have to say, everything is going great for me with Gilenya (touch wood)
I had the results of my MRI a couple of weeks ago and there have been no changes in three years so it's great. I'm also relapse free for nearly the same length of time.
I'm also fairly lucky that I haven't picked up any bugs or infections in the last year or so. My first year on Gilenya I had a couple of bad kidney infections and chest infections but thankfully, nothing recently.

Other than some fatigue and some residual numbness in my right hand side, I am really very well. Long may that continue!!

Lollipops23

That's brilliant Ash! Hoping my numerous infections are just confined to the 1st year too I'll have my MRI in Sept/Oct so will probably be nervous until then, but your progress has given me hope!

eimsRV

Embee fingers crossed for you with your jcv results. How are you feeling now?

My symptoms were pretty stable but have had a couple of rough months with my Dad passing away with cancer. I now have an UTI and various symptoms are flareing up again. I'm on antibiotics now but feel so run down

embee

Feeling okay, a little twitchy and jittery as I was supposed to have tysabri on Tuesday but am now on a pre-Lemtrada washout. I've just had three days of steroids to just counteract any brewing relapse from not being on any treatment. If the JCV comes back negative (I've been negative up until now) then I'm cracking on with Lemtrada in July. If I'm positive it'll extend the washout by another four weeks. They've said I have HARRMS so not being on treatment for an extended time is not ideal. Am just hoping that the test is negative again, am quite afraid of descending into another ginormorelapse.

Blinder

Fingers and everything else crossed for you Embee that you can start the lemtrada as soon as possible

byhookorbycrook

Hope you can get Lem asap.

Carrie6OD

Hello. I'm new to all of this. Just diagnosed recently and getting to grips with my new life...
I've been reading into the OMS diet by George Jelinek. Is anyone doing this? I'm trying to get my head around it and also trying not to barf at the thought of drinking flaxseed oil straight everyday 😷 It's all so complicated. I feel very much in the dark. We haven't decided on a course of treatment yet but I'd like to adapt my diet to a healthier one as it can only help right? Or is it all false hope?

Blinder

Hi Carrie,
Sorry you had to join our group but welcome.

As for the diet ( and this is completely my own humble opinion) ,
you've being given a diagnosis, where the outcome is uncertain but ( with all the new DMT available and the ongoing research) a lot brighter than it would have been in the not too distant past. And humans don't like that feeling of not having control. If following a healthy diet gives you back some sense of control, and helps you cope, that can only be a good thing, right? A healthy diet can't do any harm, but don't put too many high expectations on it.

Getting on treatment is ( again imho) very important, so that you can find the right one for you and lessen the chance of relapses in the future.

Be kind to yourself. It's a big shock to get the diagnosis and it takes a while usually to figure it all out ( 18 months later I'm still figuring it out)

byhookorbycrook

Sorry to hear you are joining our little club. There are so many "cures" for MS and it's easy to get pulled in. A healthy balanced diet would be sensible. Omega oils, vit B and D are important for most MS-ers too.

Blinder has given great advice, get on a treatment asap.It's been proven that early intervention is crucial to stay well.

Carrie6OD

Thank you both for replying. Yes, need to start treatment asap. It's just bloody awful isn't it.

Lollipops23

Hi Carrie, sorry to see you here but welcome nonetheless!

I'd echo what the others said; being healthy is always good but there are a lot of snake oil salesmen out there who will try to tell you that certain diets will ease your symptoms. I hate these quackologists, but that's another day's rant.

Be kind to yourself, and most of all, be patient with yourself. This doesn't come with a guidebook. There is no real "normal", so just try to take each day as it comes.

I'm 9 months in and I still have bad days, where I'm sure I'm a delight to be around. Try to surround yourself with good people- I can't state that enough. You don't have room in your life for bs friends anymore. People will tell you who they are and how much they value you at times like this. Listen to them.

Good luck, this place is great for answering questions or just venting.

embee

Always bittersweet to welcome another member to the club. My advice is to get on a treatment ASAP. The treatment that works for person X with MS may not work for you. I am two years diagnosed and I am about to start on my fourth treatment. I took copaxone, tecfidera and tysabri and none of them worked effectively for me. I am now waiting to start Lemtrada, hoping it works for me. Be vigilant of symptoms and worsening of how you feel. I was absolutely fine from diagnosis in April 2014 until last September. I went into an enormous relapse and it all happened very suddenly and abruptly, was really unwell and I had to learn how to walk again. MS is tolerable but it can get vicious without warning and cause untold problems.

Carrie6OD

Thank you all so much. It's all just so bloody frightening and confusing right now. I don't want to give myself false hope but it's nice to feel like I'm doing something proactive. I will take your advice to get on treatment asap. Thanks again you have bolstered a fragile soul!

embee

One of the things that helped me to come to terms with my diagnosis was to seek out other people going through it. I went to a newly diagnosed day with MS Ireland and it helped hugely in my acceptance. I recommend contacting MS Ireland and getting contact details for your local support worker in the area. I go to my local branch coffee mornings and support meetings and they're great. I think I wouldn't be as zen about my MS if I didn't spend time interacting with other MSers. When I was hospitalised for ten weeks, they were brilliant. Have met some really fantastic people as a result of my having MS, so I'm thankful for that.

Lollipops23

embee it's funny, I didn't find those meet ups at all helpful! I think I'm still at the stage where the less I involve myself, the better. It's funny how people can feel so differently, isn't it?

I think that's the point though; it's all about deciding for yourself what you're comfortable with and trying things out. As you can see, everyone is different and this one thing we all have in common doesn't mean we're similar people.

embee

Lollipops23 wrote: »

embee it's funny, I didn't find those meet ups at all helpful! I think I'm still at the stage where the less I involve myself, the better. It's funny how people can feel so differently, isn't it?

I think that's the point though; it's all about deciding for yourself what you're comfortable with and trying things out. As you can see, everyone is different and this one thing we all have in common doesn't mean we're similar people.

I know we're all different. I'm just saying what has helped me personally. The way I see it, my MS isn't going anywhere so I have to educate myself. Other people going through it are, to my mind, the best way to educate yourself.

byhookorbycrook

And I'm another who avoids the branch meetings! My case may be somewhat different though, as with Tysabri, I meet loads of MS-ers each month.