MS in all its glory

vmb

Wow, it looks I just have been approved for bone marrow transplant in London.

Very nervous about the waiting time!!!

ash23 wrote: »

For anyone here who has had Lemtrada, how long before you went back to work?

You are right, you can't really figure out based on other people experiences.

In my case, I was almost OK the day after the treatment, but I was very afraid of getting infections given my lymphocytes were at 0.0.

Now, after almost a year, I have got only Candidiasis and a small throat infection during this year.

My lymphocytes levels recovered super slowly up to 0.7. Now they are at 0.3 again because I've had LOTS of steroids.

Good luck with the treatment!

Lollipops23

vmb wrote: »

Wow, it looks I just have been approved for bone marrow transplant in London.

Wow, congratulations!! Can I ask how you looked into it?? Are you doing chemo too?

vmb

I had Lemtrada on Sept 16. After that, I've had about 6 or 7 relapses. my EDSS is low, but will get worse very quickly if I don't slow down the relapse rate.

In April, I had an MRI that was quite bad, and my neuro told me that we should move forward to HSCT, given my MS is ultra aggressive and I failed with all treatments (avonex, tecfidera and lemtrada).

He referred my case to a Neuro in London who coordinate the HSCT team. In order to be approved for the treatment, I visited him in June for an evaluation, and I got more information about the process and its risks.

After that, every case has to be discussed in a committee, and the letter I've received today is that the committee considers that I am eligible.

Now, the under the EU treatment abroad scheme, funding confirmation should be obtained.

It is a quite complex process, but I've been very lucky that my neuro is very supportive and agrees at 100% that this is what we have to do.

Lollipops23

vmb wrote: »

It is a quite complex process, but I've been very lucky that my neuro is very supportive and agrees at 100% that this is what we have to do.

The very best of luck with it, will be crossing the fingers that I'm still able to cross!!

byhookorbycrook

Great news, hope its very successful for you . It's still something I'm considering but glad you can get it with so many relapses and as you say the possibility of downhill v fast. Keep us posted !

Lollipops23

Having a whopper bout with fatigue the last 2-3 days. Feels like I've been on an almighty sesh, my poor brain is just on a delay and everything is such an effort.

:(:(:(

byhookorbycrook

Lollipops,I find it warm at night, but not warm enough to kick off the duvet. When I'm warm , I don't sleep well and am wrecked during the day. My previous chillow finally gave up the ghost and they are no longer being made. I got this as a (not as good) replacement last week, in Heatons, and it definitely helps.
http://www.homestoreandmore.ie/personal-care/jml-chill-max-pillow/invt/074085

Lollipops23

Thanks ByHook! Can't say I've found it too warm lately tbh. And I've been sleeping fairly well, just don't feel rejuvenated by it.

Loretogirl

Has anybody used Zanaflex? These tablets were prescribed for me recently to help with stiffness in my limbs. I searched for them on the internet but could find nothing about them.

byhookorbycrook

Also knows as tizanidine, it's a muscle relaxant. I've recently started on another- baclofen. Things to watch, don't drink with them- seriously, I had a glass of wine and conked out for about 14 hours!!!My stiffness help to keep me standing, so I'm at greater risk of falling on them, hence I use them at night. They will make you sleepy, so it's a question of trying out what the best time to take them in the evening so that you are not zonked the morning after. I take mine at about 7 pm and they kick in nicely for bed then- and my legs aren't spasming when I lie down. HTH.

vmb

I'm also in baclofen, 10mg in the morning and 20mg at night. It's not being enough as I always wake up with massive pain and stiffness.

I think I'm going to give a try to the CBD oil. It's THC free, so it won't work as good as pure cannabis. ( cannabidois effects for different diseases)

At least this is legal and easy to buy.

Does someone take it for pain/stiffness/spasms?

Loretogirl

Thanks for the replies. I found info on Tizanidine, helps relax muscles.

I was on Baclofen on a while prescribed by the nurse, when I saw the Consultant at my next visit he told me to stop taking this as I do not get spasms just muscle stiffness. I found Baclofen affected the tone in my leg muscles, made them too weak so they could not hold me up properly and I kept tripping and falling. The last doctor I saw precribed Zanaflex, they seem to be fine. I still do my stretching routine every morning.

vmb

Loretogirl wrote: »

Thanks for the replies. I found info on Tizanidine, helps relax muscles.

I was on Baclofen on a while prescribed by the nurse, when I saw the Consultant at my next visit he told me to stop taking this as I do not get spasms just muscle stiffness. I found Baclofen affected the tone in my leg muscles, made them too weak so they could not hold me up properly and I kept tripping and falling. The last doctor I saw precribed Zanaflex, they seem to be fine. I still do my stretching routine every morning.

How much baclofen were you taking? I'm thinking that maybe part of my weakness is also because of it.

byhookorbycrook

I'm taking one 10 mg a night. Otherwise, I would never wake up!!

Loretogirl

VMB, At first I was taking one 10mg tablet at night then it changed to half at night and half in the morning.

eimsRV

Good morning all. Can anyone suggest any good resources for pregnancy with MS? I'm currently 20 weeks and while generally feeling well, I've had a few issues - like falling easily, losing my balance.

byhookorbycrook

Congratulatons, Eims, Would it be worth talking to the MS society?
These would be reputable sites too:
https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Womens-Health/Pregnancy
https://www.mssociety.org.uk/what-is-ms/womens-health/pregnancy-and-birth

Salmotrutta

Congrats eims. Best of luck with it and enjoy the next few months if you can!

Anyone here have much experience of pseudo-relapses associated with an infection? Hoping that's what I'm having - had a cold the last week or so and have had new symptoms (or a recurrence of previous symptoms that cleared up) for the last 3 days - just sensory, numbness etc, but worrying all the same. MS nurse thinks it's just a pseudo-relapse but if it doesn't clear by up later in the week they may bring me in for assessment. Haven't had any new symptoms for 3 years and had a few more serious infections in that time, so a bit worried...

byhookorbycrook

Salmotrutta wrote: »

Congrats eims. Best of luck with it and enjoy the next few months if you can!

Anyone here have much experience of pseudo-relapses associated with an infection? Hoping that's what I'm having - had a cold the last week or so and have had new symptoms (or a recurrence of previous symptoms that cleared up) for the last 3 days - just sensory, numbness etc, but worrying all the same. MS nurse thinks it's just a pseudo-relapse but if it doesn't clear by up later in the week they may bring me in for assessment. Haven't had any new symptoms for 3 years and had a few more serious infections in that time, so a bit worried...

Yes to pseudo relapses . Any time I get a temperature at all , I feel old symptoms kick up. First year on Tysabri I had a lot of UTIs and had worsening symptoms that cleared when infection did .

Loveinapril

eimsRV wrote: »

Good morning all. Can anyone suggest any good resources for pregnancy with MS? I'm currently 20 weeks and while generally feeling well, I've had a few issues - like falling easily, losing my balance.

Congratulations. I am 33 weeks. I thought things were supposed to settle a bit in pregnancy but I am noticing my leg and hand weakness is triggered easier. I usually get longer walking before the motor fatigue sets in. It could be general tiredness for me.

byhookorbycrook

Another babs on the way, how lovely.

Salmotrutta

byhookorbycrook wrote: »

Yes to pseudo relapses . Any time I get a temperature at all , I feel old symptoms kick up. First year on Tysabri I had a lot of UTIs and had worsening symptoms that cleared when infection did .

Thanks. Appears to be maybe a bit more, numbness has spread and I've a small vision problem too, despite the infection being well cleared, so looks like steroids next week...

Lollipops23

Peeing frequency has SHOT up in the last 2 weeks. Have always had to get up during the night (since I was a kid) but was up 2-3 times every night in the last 10 or so days. Have found myself scaling back on fluids to try and curb the frequency, because when I need to go it's pretty urgent.

Should I be contacting my neuro or is this just part of the fun now? I'm currently awaiting the results of my annual MRI (done on Sept 30th).

Blinder

Lollipops23 wrote: »

Peeing frequency has SHOT up in the last 2 weeks. Have always had to get up during the night (since I was a kid) but was up 2-3 times every night in the last 10 or so days. Have found myself scaling back on fluids to try and curb the frequency, because when I need to go it's pretty urgent.

Should I be contacting my neuro or is this just part of the fun now? I'm currently awaiting the results of my annual MRI (done on Sept 30th).

Hi Lollipop
I'd probably head to the gp to get tested for a UTI (Urinary Tract Infections).

Blinder

Congrats to Eims and LoveInApril

Lollipops23

Blinder wrote: »

Hi Lollipop
I'd probably head to the gp to get tested for a UTI (Urinary Tract Infections).

I've no stinging or pain though....I did have a UTI about 6 weeks ago, I took an antibiotic and it cleared up pretty quick.

Blinder

Lollipops23 wrote: »

I've no stinging or pain though....I did have a UTI about 6 weeks ago, I took an antibiotic and it cleared up pretty quick.

UTI is not always accompanied by pain and stinging. I'd probably go to the GP to make sure.

Carrie6OD

eimsRV wrote: »

Good morning all. Can anyone suggest any good resources for pregnancy with MS? I'm currently 20 weeks and while generally feeling well, I've had a few issues - like falling easily, losing my balance.

Congratulations! I'm about 8 weeks behind you. Balance has gone totally but otherwise ok. Would love to hear how you're getting on.

eimsRV

Carrie6OD wrote: »

Congratulations! I'm about 8 weeks behind you. Balance has gone totally but otherwise ok. Would love to hear how you're getting on.

Congrats to you too Carrie! I'm doing well overall. I said it to the doctor in Holles St last week about my balance. He was quite dismissive and said most pregnant women get clumsy during pregnancy, change of centre of gravity, etc. This is my second pregnancy, and I didnt have these balance sensations in the first one (pre diagnosis). Last week I fell and actually bruised myself quite badly, luckily the bump didnt get a bang. I'm not sure who to go to now, I might ring the MS nurse and see what they advise.

What hospital are you attending?

Carrie6OD

eimsRV wrote: »

Congrats to you too Carrie! I'm doing well overall. I said it to the doctor in Holles St last week about my balance. He was quite dismissive and said most pregnant women get clumsy during pregnancy, change of centre of gravity, etc. This is my second pregnancy, and I didnt have these balance sensations in the first one (pre diagnosis). Last week I fell and actually bruised myself quite badly, luckily the bump didnt get a bang. I'm not sure who to go to now, I might ring the MS nurse and see what they advise.

What hospital are you attending?

I'm attending the Coombe and I have to say my consultant has been amazing. He did say the same to me about it being common to fall etc but I feel like I have vertigo sometimes! This is my 3rd and I remember at the end of last pregnancy not being able to stand for too long but I'm feeling like that now and I'm only 12 weeks! This is my first pregnancy with MS (well, with diagnosed MS) and I'm kind of petrified about everything and about after the baby comes. I'm really trying to mind myself. Hope you are too!