Last reply 3 months ago
Decisions regarding DMDs and lesions

Any thoughts / guidance on the following would be gratefully appreciated:

I was diagnosed a couple of years ago with RRMS. I wen’t on Tecfidera for 11 months but had terrible stomach cramps, continued weight loss and had borderline lymphs each month. Therefore I stopped taking them and been off them for 6 months. I have felt great and pleased to have stopped.

Today I had my appointment with the neuro where for the first time I asked her to fully explain my three scans. I had buried my head in the sand on this up to now! My last scan was a year ago which showed new lesions (including one in the spine) and she said it was moderately progressive. The next bit confused me as she stated that there are differing thoughts about MS, one being new lesions are bad and need to be slowed down, the other being it is less about the lesions and more about how you are feeling. Does anyone else understand this? The more lesions you get, the closer you are getting to disability, right?

Anyway, I am due another scan shortly, but finding out that I had progressed a little prior to Tecfidera has made me think I should go back on Meds. I have been offered Aubagio, but loving life off meds and following the OMS diet, high strength vitamin D, reflexology, exercise etc. Particularly around concerns about liver etc. I am also trying to change career as I am currently a Deputy Headteacher and I have been told whilst I might feel ok, any stress is BAD!

Please do let me know if you have any thoughts on this.

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edgarleroy
3 months ago

Your instinct that lesions are bad is correct – it’s brain damage. Your nerve connections are able to remodel and repair to compensate for the shredding (remission through neural plasticity) up until it isn’t able to anymore. Then the slide into disability accelerates. You can still feel good while damage accumulates. Treating effectively is starting to be more common. Think about where you want to be in 10, 20 years.

I like living off meds too. Instead of a maintenance therapy, try an induction treatment like cladribine (Mavenclad), which was recently approved. Just a few doses over about 14 months resets your immune system for years. It was easy for me to tolerate.

Try not to worry and just live the best life that you can.


stumbler
3 months ago

@ollie123 , I’m tempting to agree with your Neuro. MRI scans do not give a complete picture. There might be activity going on/gone on, which is not picked up by the scan.

All lesions are bad news, although, we can acquire lesions as we age…..

A healthy life style and diet are always a good addition to your MS fight. But, I believe that Dr. Jelinek, behind the OMS philosophy, does suggest that his protocol should be complementary to a Disease Modifying Therapy (DMT).

Generally, stress can be bad for our MS, although it does depend on how you deal with stress.


grandma
3 months ago

It’s interesting that there should be 2 schools of thought on the debilitating effects of lesions. They have done autopsies (for other reasons than ms) and have found the person had ms and didn’t know about it, so we know you can have it and not know, and one presumes no major relapses or symptoms. Oh I should be so lucky!

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