So I’ve posted on here once before and haven’t been very active on here since so my apologies for that and thank you to everyone that replied to me. I think I’ve been trying to ignore the possible (inevitable) diagnosis heading my way and trying to live life normally while I can. However, that kind of came to a halt yesterday after a first meeting with the MS nurse which was arranged by my neurologist.
I was awaiting lumbar puncture results and also the outcome of a second MRI scan with gadolinium enhancing dye. The upshot is my MRI had not changed and the lesions that are already there (which are described as ‘high in number’) were not enhanced. There were no T1 abnormalities and my spinal cord was normal. My neurofilament levels are normal for my age and my spinal fluid was oligoclonal band negative. Despite all this, the expert radiologist thought the lesions ‘looked inflammatory’ and given my family history with MS and my previous symptoms of numbeness in hands and feet this year, and possible loss of balance last year, they have suggested that I either have Relapsing MS (if they associate both possible symptoms with the lesions), or if they only associate the more recent numbeness then I have a clincally isolated syndrome with a high chance of going on to develop MS. Either way it sucks.
They are now offering me treatment options and I have no idea what route to go down. My options are:
1. Abstain from DMT and focus on diet and lifestyle and get rescanned in 3-6 months to look for changes. I’ve adopted the Overcoming MS diet and no longer eat meat, diary eggs or refined sugar and manage my saturated fat intake to no more than 15g daily. I am also taking Vitamin D, B12 and Omega 3 supplements. Does anyone have feedback on focusing on lifestyle changes instead of taking drugs? My MS nurse was very negative about the Overcoming MS diet which I found very disheartening as by adopting it I felt I had taken some control back. I would also be interested in any guidance on the amount of Omega 3 I should be taking? The Overcoming MS book suggests it needs to be ‘high dose’ but doesn’t specify what that level is?
2. Start a DMT. I literally hate the idea of being on medication for the rest of my life but I realise this is something I’m going to have to get over. I’m frustrated that the decision seems to be a pay-off between possibly improving prognosis for MS and developing other illness as a result of the meds. Why is the outlook so bloody shit? Anyway, in terms of my options, they have given me three options and I’m looking for advice on what people would recommend?
– Beta Interferons; I think I’ve already ruled this out as it’s the least effective of the three options they are offering me.
– Dimethyl Fumerate (Tecfidera); this seems to be my neurologist’s preferred option, I think because it’s reversible, unlike option 3. What are people’s experiences on this? I’m worried about getting depressed (more than I am)
– Alemtuzumab (Lemtrada) this treatment sounds the most effective but I do think, if I’m putting my body through this process, why wouldn’t I go further and seek out stem cell transplant as part of the re-building of the immune system process? This treatment seems like half the job? What are people’s experiences of this? The MS nurse warned me that what ever it does to my immune system is irreversible which made it sound more scary than the other options? I know I wouldn’t get the stem cell treatment on the NHS anytime soon as I need to have to failed on two DMT’s before being considered but I did wonder about going private – has anyone done this?
Other things to know about me, I’m 37 and single and want(ed) to have children. Last year, before I knew all about this I froze some of my eggs and was considering using them to have a child alone. This was the plan but now I’m not so sure. Getting pregnant will affect treatment options but also, should I even consider having a child if I have MS?
Anyway, any advice/guidance is much appreciated as I need to make a decision. At present I’ve held off making a decision and will go back in a few weeks to discuss it again.
Apologies if I have overshared – I feel like I have but I just need some advice.
Thanks for reading all this
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