Hi, I had 2 attacks at the end of last year and was diagnosed in march. I’m still recovering from my last attack which affected my speech and paralysised my right arm and i had difficultly finding words .i was not given Steriods as they were not sure what was wrong with me. I have been able to return to work although I cannot write, I have an iPad and the brain fog is improving daily. I am in a management position in a large dept store and they have been very supportive. I went through the process of choosing my medication and had decided on rebif when I received a call from my neurologist and he said he has recommended me for tysabri as it has been agreed that from debating my mri results I have a balos concentric lesion. I have to go to kings to have the tests etc. I recently got a letter from kings and have an appointment in november! Has anyone else been diagnosed witha balos lession and is it normal to wait a year before treatment begins? I am ure all of you know how scary it has been for me and I would really appreciate any advice and thoughts. Kind regards x
Hi, sorry to see no-one else has replied to you, but maybe, like me, others have never heard of the name. balos etc.
I just googled it and see it is a rare form of ms demylination.
Have you googled it? If you have an MS nurse, why not ring her to see if she can advise, eh?
Balo’s concentric sclerosis means that your lesion is a bit different to normal MS lesions; basically it is in circular layers. I don’t know anything about how Balo’s responds to Tysabri, but if a similar process to MS causes its lesions, I would have thought that it worked very well. (Tysabri is the best drug available at the moment for MS.)
Waiting a while for treatment is quite common I’m afraid The good news is that Tysabri can actually help to reduce existing symptoms in some people, so with any luck, the wait won’t make too big a difference.
You could always try phoning the hospital and asking for any cancellations?
Thank you so much for your comments xx
I have never heard of this type of lesion so I coulndn’t possibly comment on it. Regarding Tysabri though, I can. I started on Tysabri in September `11 after two bad relapses in the previous Spring. It seems to work for me, I have had no relapses since…I can’t say that I feel any different since starting it but no relapses means that it is controlling the RRMS. Good luck.