Will I see any physical improvements after Lemtrada?

[JerryD]

I am wondering if, after my week long infusion of Lemtrada, should I expect some improvements in my condition? What has anyone on this board experienced after infusion ? Stubborn urination ? Improved ? Messed up balance? Brain fog ?
Any improvements or set-backs from MSer's that have had the infusions are much appreciated ! Thanks

[dastardly]

Hi I asked my neuro this similar question he said the treatment is to stop you getting worse if it makes you better thats a bonus I feel the same after a couple of months Craig

[JerryD]

Thanks Craig. Did you do the Lemtrada treatment? You say that you feel the same . Does that mean 'the same as you felt before Lemtrada' ? How long ago did you complete your 5 day course? Did you have any weird new problems? Did any symptoms improve ? I am the curious type ! And I'm sitting around waiting for another 'shoe to drop' !

[Maryjane135]

Hi Jerry, I am ten months post first dose. I feel the same as I did before Lemtrada except for dealing with side effects from Lemtrada! My doc talked to me about the second dose (due in March) and I am thinking I am going to decline. Dealing with the MS 1 to 1 people has been a nightmare!I just don't think Lem has done anything for me to continue. Jen

[JerryD]

Hi Maryjane135, thanks for responding . Sad to hear that you aren't seeing anything good from the nasty treatments! What side effects are you experiencing ? I feel like every treatment is a gamble! I continuously email the NMSS and request that they publish the 'real world' data from the various stem cell treatments ! No matter what I find online, stem cell trial outcomes are always incomplete and shrouded in secrecy! But IMHO it is the only treatment that has shown to 'defeat the beast' MS. Hope you find peace and leave the 'MonSter' behind! Good luck

[dastardly]

Hi JerryD yes I had lemtrada about 9 weeks ago (seems longer) and I feel the same as before the treatment, the only unusual side effect I had was during treatment about 4 hours into it my entire Right hand side shut down I wasn't worried as my neuro talked me through every event and I was

reassured through the entire treatment I couldn't move my leg or arm so had to spend the night in hospital, my Neuro told me you can sometimes get a reoccurrence of your symptoms during treatment and thats what happened to me, this was sorted out and a few hours later in hospital all

movement returned back to normal, I also got the shakes real bad my Neuro again told me to expect this its my body fighting off the lemtrada and some drugs fixed this, and the last S'E is when I got home about a week after treatment I could smell smoke all the time this happens in MS never to me before I had this for a few weeks.


So its been 9 weeks I feel fatigued a lot but it is summer down here so it is to be expected, I feel weak down my Right side but no more than before treatment, I've had 2 blood tests since treatment the first caused a little confusion, at 10 pm I received a text message

""blood watch has detected an important abnormal blood result your platelet count is 122 please contact your Neurologist urgently
even if you feel well if you cannot reach your DR seek immediate medical attention ITP must be diagnosed and treated early""

its 10 pm my Dr's are sitting at home I don't have their home No's so I panicked and went to hospital to see if my count is ok or do I need to do something, when I got to hospital the treating I asked the Dr what should my count be he replied "I get mixed up between hemoglobin and platelets" so I don't know anyway after a few hours of waisted time sitting in hospital I was told my count isn't that low to be concerned after another blood test it came up a little so I went home and had an appointment with my Neurologist a few days later he said he also got the text message and not to worry if I need medical attention he will contact me. and thats where Im upto now all good I don't feel any better or worse than before the treatment my last blood result came back all good my white cell count is still low and I still feel very positive about this treatment I was told not to expect anything before 6 months keep well guys Craig