@Hannah015

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Hannah015

Lemtrada in 2 weeks

Hey all Hope you're all ok and enjoying the sun :) I finally heard about my treatment, my ms nurse believes it should be in about 2 weeks. Odd not heard from neurologist about this but he can be hard to get hold of. I have recently got over a sensory relapse. I know it's over cause I somehow picked my straighteners up by the heated end and burnt my hand, ouch but yay I can tell pain again :). Think oxygen therapy has helped with that. Exciting times xx

Stumbler

@Stumbler

@Hannah015 , you must feel like a five year old waiting for Christmas to arrive! :wink:

Hannah015

@Hannah015

@stumbler how funny I really do :) it's been a year and a half wait which is way too long I think, but just glad now it's being sorted. Hope you're ok x

KrisP

@KrisP

Hi I know I read a lot of your early stuff and how you were campaigning not only for you but others too Well done and good to hear about your treatment!

Hannah015

@Hannah015

@sandwich I'm having it at QE :) thank you x

Hannah015

@Hannah015

Thank you @krisp :) hope you're ok x

chloeautumnx

@chloeautumnx

That's great news @hannah051! I had my treatment about a month ago and it went swimmingly well. I still have my daily symptoms but hopefully no more relapses! My advice would be to take it steady, remember the treatment is not a cure afterwards so don't do too much and get plenty of rest. I wish you all the best of luck with your treatment :)

Hannah015

@Hannah015

Hey @chloeautumnx Brill, are you feeling ok now? I spoke to the nurse at QE today and she said it will be middle of august but that's cool by me now I have a date soon :) x

chloeautumnx

@chloeautumnx

Yeah I feel alright thanks! No more relapses yet and I hope that continues! The treatment course went well, I was just pretty wiped out and I didn't really have the rash for that long, only a couple of days). Still have my symptoms that I have developed from my previous relapses but I am trying to combat these now with the help of professionals so I'm happy with that. I'm really glad you have got a date for treatment. I am off for my first monitoring appointment on Wednesday, that month has flown by! All the best. X

TracyD

@TracyD

@Hannah015 About blooming time girl .... really chuffed for you, hope you've started preparing for it already :-) xxx

Hannah015

@Hannah015

Hey @tracyd I know finally :) it's actually on 17th august now I have had it confirmed but just glad so soon. I have been doing my oxygen therapy, had 15 sessions so far, drinking lots of water, exercising and taking vitamins. Been following your blog and it's helped me loads. Glad your doing so well, go you, germ free hugs ;) xx

TracyD

@TracyD

@Hannah015 how is the oxygen working out for you ? It works wonders for me. Still doing really well after treatment, so far it's surpassed my expectations, I guess the earlier after diagnosis you boot it up the arse the more immediate the effects are - well that's how it is working for me so far. Glad the blog is helpful, yesterday it went over 7,500 views worldwide :)

Hannah015

@Hannah015

@tracyd it's been really good to be fair, I have found it's helped loads with brain fog and fatigue. Doing 1 to 2 sessions a week now. Also doing reflexol

Hannah015

@Hannah015

Somehow posted it before finishing lol. That's brill, so glad your doing so well, hopefully be as good for me :) that's awesome, you are brilliant at the blogs. Thanks for all advice, even nurse said I am very prepared, I told her about the blogs :) xx @tracyd

TracyD

@TracyD

@Hanna015 I've given the blog details to my nurses, doctors and neurologist team as well, if it helps with questions, fears or just life for one person then I hope to have done a good thing :-) xx Oxygen helps with fog and fatigue for me too, had to do 2 a week before Lemtrada now only 'need' it every 10/11 days before I hit the wall where as before it was always day 5 before I 'needed' it so now I just do once a week :-) Got everything crossed for you xxx

TracyD

@TracyD

@orlando27 Congratulations on the approval, best advice I can give is prepare well and keep it going after treatment, support your body in it's recovery in every way you can so that you mitigate the risk of encountering the post treatment symptoms people report, an I know it makes me stupidly hypocritical to say this, but don't overdo things too much to test your boundaries post treatment. If you feel better for a while and then 'hit the wall' be realistic enough to realise you probably felt that shitty all the time before you felt better, it's a huge shock that it doesn't creep up on you it sneaks up behind you and hits you all at once with no warning. Have missed mbrsinc :-( xxx

TracyD

@TracyD

@orlando27 I've seen a lot of improvement since my treatment, cautious welcome at first thinking I might steroid crash, but I did everything I could to stave that off, I'm in week 8 now so I'm thinking that I'm past that :-) I have the feeling back in both my legs and feet and the footdrop and spaghetti leg are gone, some feeling returning in my left arm and the trunk of my body. The cog fog, fatigue and aching limbs is not a problem (but I had fixed that before Lemtrada with oxygen therapy and I've kept that going since treatment finished) my balance is still a little dodgy, but then I've always had the coordination of epileptic bambi on rollerskates, on ice, blindfoled and drunk - so I can't completely blame MS for that :-) As for the respiratory infection, like you I've not had any kind of infection in many years (possibly as a result of an overly excitable immune system) but I've taken a lot of immune system boosting supplements which I know sounds mad when you're effectively neutering your immune system with the treatment, but everything needs to be fighting fit to pick up the slack so I'm scoffing them like sweeties and so far touch wood completely free of all germs and plagues :-) xxx

Hannah015

@Hannah015

Thanks @tracyd I'm in hospital Thursday for my tests. What supplements did you say you take? Just so I can see if there is any I'm not taking. Sorry to be a pain So glad it's all going well for you, hope I do as well :) xx

TracyD

@TracyD

@orlando27 I was DX'd in September last year with RRMS and In January it was upgraded to severely aggressive as it was attacking my legs and sight. I went in prepared to fight for Lemtrada and made my case for why it was the only suitable treatment - fortunately my Neurologist agreed :-) @Hannah015 Biotin - 20,000 UI a day Vitamin D Calcium and Magnesium (helps absorb the vitamin D) Evening primrose (all women should take this otherwise we are nuts) Cod liver Oil Omega 3 oil High strength 1 day multi vitamins (taking 2) Immune System Booster (immunace I think it's called) 1-2 day Collagen - for my joints and skin

Hannah015

@Hannah015

Thanks @tracyd I'm not taking all if those on list but I will be getting them, thanks Hun xx Thanks @oralando27 :) yeah I take the very high potency vitamin d3 tablets, been on them a year now, never miss them just I case :) x

KrisP

@KrisP

Hi guys Not sure if you've seen it before but tre mssential vitamin looks good, all I add to it is saffron, omega3 and more biotin Might be worth a look for you all

Hannah015

@Hannah015

Hey @krisp that's brill thanks will have a look :)

Hannah015

@Hannah015

Hey @zoe thanks Hun, hope you're feeling good after your Lemtrada :) got my tests on Thursday for it and just received my Lemtrada pack, never thought I would be so excited lol xx

TracyD

@TracyD

@Orlando27 - it is vitamin D3 .... what can I say MS aside, I'm just a very special girl (in that kind of dropped on your head one too many times as a baby kind of way :) ....) xx @Zoe - Are you the Zoe from Twitter ? :-) xx

TracyD

@TracyD

@orlando27 here in the UK we have MS Therapy Centres dotted around the country, most have Hyperbaric chambers in them and because it's a charitable organisation it is donation based the recommended is £10 per session for an MS person - it is reduced for those who have a need but limited finances. Not sure whether you have similar in the USA, but have a look around for diving clubs in your area - they are likely to have them and might well allow you to take a dive with them :-) I guess how you feel after the treatment is pretty much in the hands of the fates, I suspect the worse you felt going in then it's harder coming out. Positive mindset I think is essential, we all hope for the miracle, but the least I expected from Lemtrada was to stop this shitty disease in it's tracks, so far it's exceeding expectations, this is a long term treatment, not a magic bullet, be kind to it, like a child it needs time to develop, flourish and grow into what you want it to be, it's not Superman Captain America and Wonder Woman all rolled into one :-) xxx Oh and your Nemesis .... no longer here :-) xx @Zoe .... ohhhhh elllooooo :-)