18 May 2016 10:12Last reply 22 May 2016 08:29
@charliegirl , is it this one:-
I had Lemtrada last August, due for 2nd dose No benefit at all. Dont know if I want the 2nd lot. Been sick more after having it than before.
Stumbler was one a Dr Wheldon used on his wife. good results.
@charliegirl , there's a bit of a blog about Dr Wheldon and his wife here :-
So should I hold on and hope the 2nd dose of Lemtrada helps me? In what ways will I see a difference? They have told me I wont improve as I have TOO much damage but it will keep me in a holding period for 5 years instead of 2 as is my pattern.
0Dont know what to do? Have lost faith in the Neuro I was seeing. He put me back on Gabapentin after having a reaction.and increased the dose. I had 8 falls in 2 days and ended up in hospital. I couldnt weight bear at all, whereas I usually could. The doctors said Its a relapse. I said No it isnt its the drugs. After 24 years with MS I think I know when I am relapsing. I stopped the drug Monday AM and by Tuesday lunchtiime I could move my legs. Hence I want a different Neuro. The MS nurse hasnt got back to me in weeks.. My frustration levels are through the roof. They said It is my choice to have the Lemtrada but doesnt feel like it.
@charliegirl , it is difficult to make any suggestions without a bit more detail about what's going on.
If the Neuros are suggesting a relapse, then an MRI with contrast would confirm this. A prescription for high dosage steroids should have been considered to address the relapse.
Have you been to see your GP/family Doctor to discuss what's going on? They might have some suggestions to have you referred to another Neuro, as well as look at you holistically to see if they can help with some of the drug problems that you have experienced.
It wasnt a relapse. was the Gabapentin. No one listens to me.
@charliegirl , what was the Gabapentin prescribed for? How long have you been on it and at what dosage?
Good morning to you @charliegirl
That's terrible that no one listened to you, especially with you having ms for a long time.
I've heard plenty of ppl say gabapentin not for them bcoz it can make you feel real shit.
My friend (not ms) had back surgery and was put on gaba at 100mgs 3x a day and she actually looked like death. She said it was the worst feeling ever.
I'm on 3600mgs of it a day but that was slowly put up over years.
I wonder if they maybe started you on to high of a dose?
Enough to put you off it nonetheless I guess.
Love to you.
Gabapentin was for pain. Dose was increasing at 100mgs every few days. Started and was okay but as soon as I increased it to 200mgs 3 times a day. The falls as I said 8 n 2 days. the paramedics said they couldnt leave me at home on my own. A professor of Neuro said It isnt a relapse She has had Lemtrada IT IS the gabapentin. I call it my Kryptonite.
@charliegirl , if the Gabapentin is proving a problem, perhaps Pregabalin should be considered as an alternative..........
I've taken Neurontin for my MS and Fibromyalgia for 11 years...at the very beginning I remember feeling strange, dizzy, tumbled lots, was slurring and according to my husband, even putting copious amounts of bananas into the shopping trolley one day!!!...I'm on 1600 mg a day now, with hardly any side effects. A few of my friends have tried them for back nerve pain....from observations, they certainly take time to adjust and the dose needs to be increased gradually....x
I am taking Panadol osteo and Ibuprofen which helps more than the other drugs. I am so disheartened with the whole Lemtrada treatment. Have managed to get in touch with Dr Wheldon's wife. Hoping to hear back soon. Why does the MS treatment mean so many taking of drugs? You take this for that and it causes this so more drugs.
On a happier note I went out and drank a whole bottle of Chardonay......Bad Me.........and could ditch the walking stick.............my Neuro Laughed and said Not a Good Idea...felt good. MS nurse finally called back....fingers crossed for some solutions.
Why are people so happy maybe not the right word to compromise their liver for more drugs? ........scares me with everything they want me to take will cause a whole set of other issues. Not willing to do this myself.
@Charliegirl....At the moment I just incorporate diet and lots of painkiller brain med's( as my doc puts it so politely)....I can't differentiate between my chronic fibro all over pain and my MS nerve pain and faint, so I do need instant pain relief which I hate exploiting my body with...Alcohol is a relaxant...after the 70's night, I got up from the table after a few drinks, my husband couldn't believe my walking...I told him I was going to take up drinking full-on from that moment, if it aided my gait...imagine my demise then?? Ha...my liver would be twice the size(no moderation me!)???.....my sensitive body is so allergic, even painkillers, oramorph etc, creates rashes on my skin...these meds are no good for me whatsoever, but I tried eliminating them slowly a while ago..what a state I became???there is no way out for us sadly, the drug companies are aware of our reliance, and exploit us and a million and one research animals to the max?....crack open two bottles, I'll just get my coat ?x
I sometimes think the drug companies deliberately let the SE go through so you need to take more drugs. The only good thing for me about Lemtrada is being on nothing else. I take Baclofen and over the counter pain drugs...Blood and wee test every month is a pain. Got a text from Bloodwatch to say Thyroid levels up see your treating doctor......I paniced all w/end only to find the levels were still under normal. why do they do that? it is a considering factor to whether I do the 2nd lot of Lemtrada.
Lemtrada is not all it totes to be....I know everything has SE but for me I've gotta decide what more I want my body to endure.......The doctors are telling me the drugs they give me MIGHT help.............I dont do MIGHT anymore........ Too much at stake.............Have already given up so much bc Of the MS and dont have much left.....Last December I decided that I am NOT gonna fight the MS anymore........gonna do what makes me smile and happy.......My doctors said You cant give up!.....I said I'm not am just gonna live my life....do gym.....keep as happy as I can be.... My friends and GP are supporting me so all good........Feel so much happier now.
@charliegirl.....I do admire you?....when Dx 2005, my Neuro told me he was worried about me after pointing out the damage on my MIR .....he wanted me on Campath in hospital for a week...I'm guessing it was at trial stage then...being the stubborn me and unwillinb to compromise my allergic body, I refused and carried on with my low fat Swank diet plan....he snubbed me ######## the the MS nurse called him into the hops suite to see how well I looked, how much better I was walking and how thin I now was....he didn't even acknowledge me and turned on his heel as if to say 'my way or the highway'....horrid young man.....later that month he wrote me a letter to say he had discharged me, and I should get in touch with the MS nurse if I needed anything...how cruel
From that point on, I refused to have MRIs (I don't want to know my progressivd demise, but that is an individual thing every one of us much choose ourselves).....I know my body, and am happy keeping as healthy as possible, and laughing all the time....positive energy is good enough for me. I know this couldn't change at any time but for now I'm plodding on quite happily?
So @Charliegirl live your dreams if it makes you feel good lovely, we are only on this earth for a short time.....I'm booking things all the time now that I can get out again after my fall, frozen shoulder and smashed knee....I know everh bird's name in the tree in the house opposite......go for it girl!
Madness the band who my brother and I used to dance like mad to are playing in a castle near our home in August....my brother told me he would take me to a larger enclosed venue in England......why? No way...am booking tickets tomorrow for 4 of us....I might have to sit for a large part of the concert, but I'll take that?....my motto, do everything you can MSers NOW....haven't been on hols for ages, so my husband booked us a short cruise for my 50th, am sailing on 30th for a week and can't bloody wait xxx
@teddy1 Thank you for your kind words..........I like you are doing everything I want to..............we went to see Robbie Williams last October and I was wrecked for days but boy was He HOT lol........I dont get doctors and others telling me what I should be doing, taking, feeling etc......MY life people...........I didnt think I could say NO to MRIs......They stress me out.........I cry and I HATE them...........I dont see any benefit in seeing the damage when I know what the MS is doing...............NO more for me..............I am quite happy to keep doing what I am.......watching what I eat..sometimes lol...and start gym for upper body and core strength to enable me to get up when I fall rather than have to call the paramedics..........I live alone......my independence is something the MS is not gonna take from me............I hope we can still keep chatting .........take care xxxx
Ladies, I respect and applaud your attitude. The brain is a very powerful and under-utilised resource, so whose to say whether this is equal, better or worse than the scientific approach............
@charliegirl keep that positive attitude.....it works wonders?....my mother would have loved Robbie....I'm stuck on Spandau Ballet (now I'm showing my age)
With this cruel illness you either sink or swim....well, I my mind I still have that high-powered job and drive a Z4.....?.....adapting to this has been a challenge....now retired(omg I wouldn't be fun Teacher Lisa... would probably throttle the Primary kids in my class now I have MS and mood swings...lol) and rely on people to chauffeur me because I voluntary handed my license in this year, so I have more energy to do other things.
This group is so friendly and positive....I wish there was a way we could all meet up for a themed night, crutches, limps, wheelchairs et al....?
Stumbler, high maintenance independent women are fun....I'm back in the room from yesterday...with my coat?x
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