Hi, My husband a very fit & healthy man woke in Febuary with loss of sensation on his right side . He was told it may be a first attack of MS as he had lesions on MRI & after a few days in hospital he was discharged with steroids. After improvng for the first few days he soon started to deteriorated further eventually getting to the point where he couldnt speak & had lost complete function on his right side. He has had further IV steroids and plasma transfer but despite physical improvement ( he can now speak better & has limited functionality of right arm & leg )his MRI shows further deterioration. We are yet to get a definative diagnosis - its either ADEM or aggressive MS.He has just had a day of chemo -cyclophosphamide & there is talk of doing a stem cell transplant - has anyone else had similar experiences / advice ?? As its is such a scary thing to be going through & there is very little information online about these treatments for MS /ADEM
Hi Anon,this must be a terrible time for both of you, but the medics are taking it very seriously and they will have to explain everything to your satisfaction.I had a chemo treatment called MITOXANTRONE a few years ago,the purpose was to knock my immune system down before I was started on a daily self injection.
I’m guessing that is what the chemo is intended for and the effects will be monitored in various ways probably including MRI scans.The next stage will be determined by their findings,but only proceed if you fully understand what is happening,the risks, probable outcome and follow up treatments.
Just occured to me, are you in the UK? No matter,but the weather is poo isn’t it.This is probably the best place to ask questions and find support,so please keep us informed if you think it will help.
HI, yes we are in the UK. They are giving him the cyclophosphamide to reduce the inflammation in his brain & reduce his immune system , they are going to give him drugs to stimulate his stem cells this week & harvest them in preparation for a stem cell transplant .He has had very aggressive onset & doesnt seem to be responding to treatment so far. The neurologist has been great & explained everything well but I couldnt find much information about it so wondered if anyone else on here had had this treatment & what their results had been .
It sounds like they are treating whatever it is very aggressively which is good. It must be a very scary place for you both at the moment but it sounds like he is getting cutting edge treatment and the best care. Where about are you in the country?
Stemcell treatment is still in its early days for ms but the results are very positive. It’s something I’m looking into myself.
It sounds like they are treating whatever it is very aggressively which is good. It must be a very scary place for you both at the moment but it sounds like he is getting cutting edge treatment and the best care. Where about are you in the country?
I’m not sure from your post if its HSCT treatment is what is being looked at? It’s still in its early days for ms but the results are very positive. It’s something I’m looking into myself.
Sending you both lots of positive thoughts and please keep us posted.
Hi , Yes its HSCT that they are considering ,he’s having the harvest Monday , we are waiting for the results of his last lumbar pucture which may give more of an indication of what we are dealing with before commmiting to the HSCT , they were also considering Tysabri.Although the lack of a full diagnosis is just giving his demylinating disease a name it might make the choices easier to make. He has had really bizzare symptoms like the almost complete lack of speech & at one point he had 24hours of constant laughter -distressing for us & exhausting for him. We are in Sheffield.
What a shockingly horrible time you are both having. I cannot add anything useful, I am afraid, but send good wishes to you both and hope that the doctors manage to stop this disease process (whatever it turns out to be) in its tracks.