MS in all its glory

coughdrops

Generally I feel a better in cold crisp weather than in summer time. Very tired the last few days though, back to dragging myself out of bed. My left leg is a bit "off" too, balance isn't great and feels a bit numb.

Not sure if it is weather related or not!

ash23

I'm grand although I am feeling the cold a lot. I started on Gilenya last week so that's been a big change and I'm finding myself completely exhausted in the evenings.
Once I get in from work that's it, I'm wiped.

I'm hoping it'll pass in a while once I get used to the drugs. In terms of symptoms, no new ones to report and no changes to existing ones so that's good I guess.

byhookorbycrook

Cold and crisp is good for me too, Damp and cold, uergh! Good luck with the Gilenya, Ash

coughdrops

Feel like I am getting a head cold, which in turn is making my symptoms feel worse. I imagine it's down to the cold compromising my immune system?

Do you guys get the flu jab? I've never done, but maybe it would be a good idea.

fergal.b

Everyone in this house gets the flu shot just to be on the safe side, your immune system is lower with MS and the last thing you need is the flu on top flu symptoms





.

ash23

I had the flu jab a couple of weeks ago. First time I've had it done but figured it was worth it because I find since I got MS even the simplest cold has a knock on effect on my MS symptoms.
Now I'm on Gilenya I figured I should definitely get the flu vaccine.

discobeaker

Got the flu shot last week. My doctor advised me to get it. Felt abit crappy for 48 hours after getting it done but that's normal apparently.

coughdrops

Our local pharmacist is doing them this year, so I think I'll get it done. What's another needle eh?!

byhookorbycrook

I get one each year. The gp's nurse texts me when the vaccine is in and I get over for it on my lunch break!

ash23

Had my first fall last night. I was coming down the stairs and knew there was the last step but my brain just didn't get the message to my right leg fast enough so I went flying. Luckily it was only a small fall but I'll have to be more careful!

Legs are black and blue from various stumbles and walking into things. Luckily it's winter and they won't be on show!!

coughdrops

Hope you didn't hurt yourself :-(

I'm always afraid on stairs, it's like I know the steps are there, obviously I can see them, but find it hard to register how many are left to climb or to get my feet to find them.

That's a crappy description!

I walk into things every day. Mostly my own furniture/doors which I know are there!

byhookorbycrook

My legs are always bruised from school desk height. That and the years I was injecting into my legs made for some very strange looks at my husband on the beach on holidays.

ash23

I thought that now I wasn't injecting anymore my legs would be bruise free - they're worse than ever

val444

Hi all,

I haven't posted here for ages, I have had my mind on other things I guess. I wanted to let you all know that I am three months pregnant (Yay!). I have been referred to the high risk clinic for the pregnancy, simply due to MS, which wouldn't be the case in any other country. There is also a question mark over my eligibility for an epidural as some anesthesiologists won't give them to people with MS apparently. I was shocked!

I had been excited about my MS symptoms dying down, as all the books seem to suggest they will during pregnancy, but sadly that has not been my experience! I was having a rough time of it anyway, having been off all meds for baby making purposes since January. Since I got pregnant, I haven't been able to feel my feet at all! Some days the numbness travels further up my legs and so I have to be super careful not to trip or fall, with the important cargo I have on board.

On balance though, we are delighted and I know it will all be worth it. I am lucky in that I have the full support of my neurologist and she is always just an email away. I know I am not the only one on this thread with baby plans, so please reach out if you have any questions at all!

trishawisha

Congratulations Val! Ye must be delighted!
We got married in September and have just starting trying for baby, had a talk with neurologist a couple of weeks ago and he told me it might not all be rosy for MSers and pregnancy- it was the first I had heard of it.
Thats scary about the epidural, I hope that is not the case for most anaesthesiologists!
Are you going to play it by year after the birth with regards breastfeeding? This was one of my big issues- if a big relapse comes, best to start medication again asap? I would like to try breastfeeding and be a normal new mom, but will have to wait and see what way the illness reacts.
Its all quite daunting, but hopefully I will be a couple of months behind you

coughdrops

Congratulations Val!! I'm off my meds since April, and got go ahead from Neuro last month. He was happy with my symptoms not being too bad at the moment, being med free hasn't impacted me yet. So hopefully by this time next year we'll have our baby and I'll be back on track. Bit crap that your symptoms haven't died down though (that's meant to be a pregnancy bonus!) Wishing you a very healthy and happy pregnancy xx

trishawisha, good luck!

byhookorbycrook

Delighted to hear your good news. I had two epidurals during the summer for back pain and there was no issue. Sic your neuro on them!

val444

Oh I have every intention of demanding an epidural. There is enough literature out there about there being no additional risk when the woman has MS for me to fight that if necessary. When it comes to childbirth, I am definitely pro-drugs! It was one comment by one midwife, I won't take it as gospel.

I will have to play it by ear with breastfeeding, it will have to depend on my health at the time. If I could manage six weeks, before going back on Copaxone, or more likely at that point, Tysabri, I will be happy enough!

Leogirl

Hi all,

Hope everyones keeping well & enjoying the cold weather

I have a quick question on vaccines for foreign travel - I'm going to Brazil in January (yay ) & I know I will need some vaccines. I've looked it up & it seems its not a good idea to get the yellow fever one, thats ok as the area I'm going to is little to no risk but are there any of the other vaccines I should reconsider getting. I think I need hep A & B, tetanus & I think thats it.

Any info would be much appreciated before I visit the GP. Thanks.

ash23

Leogirl wrote: »

Hi all,

Hope everyones keeping well & enjoying the cold weather

I have a quick question on vaccines for foreign travel - I'm going to Brazil in January (yay ) & I know I will need some vaccines. I've looked it up & it seems its not a good idea to get the yellow fever one, thats ok as the area I'm going to is little to no risk but are there any of the other vaccines I should reconsider getting. I think I need hep A & B, tetanus & I think thats it.

Any info would be much appreciated before I visit the GP. Thanks.

I think it depends on the meds you're on. I'm on Gilenya and was told not to have any live vaccines but that other than live vaccines, other vaccines were fine.

Leogirl

ash23 wrote: »

I think it depends on the meds you're on. I'm on Gilenya and was told not to have any live vaccines but that other than live vaccines, other vaccines were fine.

I'm on Rebif. I'm checking it out online & the areas I'm visiting are quite safe for most things so I think I just need Hep A, a Tetanus shot & maybe Rubella as I never had that one in school. Malaria & Yellow Fever not a risk where I'm going. Seems a bit silly for a week/10 days but better to be safe than sorry :-)

I'll be like a pin cushion between those & my rebif injections :-)

Big C

Hello all, In todays news is a court case re assisted suicide, Not going into that here but on all newscasts it refers to a lady who passed away (rip) was in the last stages of MS, I believe their is no such thing as last stages of MS. Thats like saying a person is in the last stages of a broken arm or last stages of being blind.

MS won't kill a person (won't do them much good either). People do die with MS and not from MS.

Hope this makes sense. MS is bad but it won't kill you

fergal.b

Big C wrote: »

MS is bad but it won't kill you

To some sufferers thats the bad thing about it




.

Big C

fergal.b wrote: »

To some sufferers thats the bad thing about it

.

I have ms, I dont suffer from it, my wife suffers from it

byhookorbycrook

It annoys me when media get " the last stages " phrasebook out. I texted one station today to complain. That kind of scary stuff doesn't help.

sqooka

Hi again all,

I was hoping someone who's been through all of this before could fill me in, Once you've nominated the pharmacy where you'll be getting your meds, and you've received your long-term illness book, having already given the pharmacy the prescription.........then what? Can you just bring your long-term illness booklet up to the pharmacy and collect it (copaxone for me) and away you go? I told I was told a nurse would be in touch, but never was, I can always call my doctor to get a contact number for her, but I'm not sure how long I'll be waiting...

ash23

sqooka wrote: »

Hi again all,

I was hoping someone who's been through all of this before could fill me in, Once you've nominated the pharmacy where you'll be getting your meds, and you've received your long-term illness book, having already given the pharmacy the prescription.........then what? Can you just bring your long-term illness booklet up to the pharmacy and collect it (copaxone for me) and away you go? I told I was told a nurse would be in touch, but never was, I can always call my doctor to get a contact number for her, but I'm not sure how long I'll be waiting...

It was actually my pharmacist who followed up on the copaxone nurse for me as I got my prescription Christmas week and sort of fell through the cracks.
Basically I dropped the script into the pharmacy and then the next day collected the meds. I asked him if someone would be in touch and he said he wasn't sure but he called the high tech med unit and the next day the copaxone nurse called me to arrange to meet to go through taking the meds.

Where abouts are you located? If you're in the west I can PM you the number for the copaxone nurse here.

sqooka

Thanks, I was very confused about the whole process. I dropped the script in to the pharmacy over a month ago, but hadn't yet gotten my long term illness booklet yet, so I haven't collected them, but will do ASAP. Unfortunately coz of my work hours I doubt there'll be an actual pharmacist there when I collect them so maybe I'll ask a for a number, call up and then see if they're able to contact the nurse for me. Thanks a million for the offer but I'm in north dublin, if anyone has a number they could PM me for that region that'd be fantastic though!

byhookorbycrook

How are all the Ms-ers with the change in temperature? Cold or hot weather seem to impact quite a lot on many of us.

ash23

Temperature isn't bothering me and I've been feeling great on the Gilenya but just had a call from my GP and my liver enzyme results have gone crazy so it might be back to the drawing board again for me in terms of treatment.