Hello all, I was diagnosed with Ms 10 years ago and in this time I have had Gilenya and Lemtrada as well as the first dose of Mavenclad and then half of the second dose. It has recently been discovered that all of my symptoms were being caused by a very rare tumour on my Petrous Apex.
I was halfway through my second round of mavenclad and was told to stop. It turns out that I should not have been taking dmts while I have an active tumor. I have since found out that 10 years ago this tumor was detected when it was 9 mm as opposed to last year when it was 1.8 cm. Now I am sitting here with two boxes of mavenclad that are worth $25,000 Australian dollars. I am not sure what I should do with this. Any suggestions would be great.
Regarding the tumor I have already had a surgery to try to remove it and they only took biopsies which showed nothing which indicates that it's likely a low-grade chondrosarcoma and they simply took the jelly bits around the cancer as opposed to the actual bits with tumor markers. Lucky me.
I can't feel half my face, while suffering agonising trigeminal neuralgia. Among other things.
I would like to say as someone who was diagnosed with MS and likely doesn't have MS, that I am so sorry for how some of you have been treated as patients in various medical systems and how painful and ungratifying medical help can be. Even I was told that for some of my symptoms I should just increase my antidepressants. So I feel like a bit of a fraud and I'm sad that some people may have not been diagnosed with Ms appropriately and I have taken the treatment from them which they need and deserve.But, at the same time I'm very lucky that I had the diagnosis because that means I have 10 years worth of MRIs to look back on to show the growth of my tumor which nobody picked up because no one was looking for it.
I really hope no one else has all their symptoms swept under the MS blanket and I hope everyone here can advocate for themselves medically. It's your body. It's your experience, you know best. So, yes, any suggestions on what I can do with $25,000 worth medication would be really really great. I'm based in Austria. Happy to gift or donate.
Much love and understanding xx