MS in all its glory

vmb · 18-07-2017 11:02AM

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 · 18-07-2017 11:06AM

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 · 18-07-2017 11:21AM

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 · 18-07-2017 11:25AM

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 · 18-07-2017 07:41PM

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 · 17-08-2017 12:00PM

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 · 17-08-2017 08:02PM

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 · 18-08-2017 07:53AM

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 · 13-09-2017 05:51PM

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 · 15-09-2017 06:53PM

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 · 15-09-2017 07:16PM

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 · 17-09-2017 11:33AM

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 · 17-09-2017 11:38AM

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 · 17-09-2017 08:30PM

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

Loretogirl · 17-09-2017 09:15PM

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

eimsRV · 02-10-2017 08:31AM

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 · 02-10-2017 08:33PM

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 · 02-10-2017 10:50PM

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 · 03-10-2017 08:51AM

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 .

byhookorbycrook · 04-10-2017 10:29PM

Another babs on the way, how lovely.

Salmotrutta · 05-10-2017 09:13AM

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 · 09-10-2017 08:58AM

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 · 09-10-2017 09:24AM

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 · 09-10-2017 09:27AM

Congrats to Eims and LoveInApril

Lollipops23 · 09-10-2017 09:35AM

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 · 09-10-2017 11:24AM

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 · 09-10-2017 12:22PM

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 · 09-10-2017 12:37PM

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 · 09-10-2017 12:46PM

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!

vmb · 09-10-2017 03:00PM

I had a mri one week ago, and again, it's dreadful. Since April I've got a new big lesion in the brain, and other lesions have grown.

Using the contrast, there are multiple active lesions. I've been living in a continuous relapse this year.

Apart of have my sensitivity broken and general weakness, pain is my biggest concern. It's out of control. I am on gabapentin and palexia, but they are just not working at all. I have an appointment with the Pain Unit team next week, but I don't know what to expect. I've met the pain consultant as private patient, but unfortunately the prescribed drugs didn't help

Are any of you trying other pain medicines apart of gabapentin/pregabalin? I'm going to give a try to CBD, the legal cannabinoid, but I'm not too confident because THC is also important for the pain management, and that is not legally available yet.

Tomorrow I am heading to London for the first appointment with the HSCT team. I really need that working, it's being a very rough year!

MS in all its glory

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