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Where do I go from here? help needed

Hi Guys

I’ve been diagnosed with MS. I have other health conditions (J Pouch - Ulcerative Colitis, Diabetes, Depression). I wonder if any of my other conditions could be responsible for the MS symptoms.

I’ve got to see a nurse specialist, then see the consultant in 4 months. He wants to try to halt the symptoms in their tracts.

He’s given me to treatments to choose from, 1) Tecfidera Tablets - ongoing, 2) Lemtrada Infusion - 4/6 sessions.

Has anyone had or having these treatments.

My other thread - https://community.mssociety.org.uk/forums/new-diagnosis-and-diagnosis/im-having-loads-tests-carried-out

Might it be worth a chat with your GI consultant about which would be kinder to your gut and less likely to exacerbate existing problems? Might it even be [possible to get her/him to discuss your case with the neurologist, particularly if they are in the same hospital? I do not know whether Lemtrada causes GI problems for some people, but Tecfidera certainly can. If your GP is a good 'un, he/she might be prepared to look at the options in the context of your other conditions and (I expect) current medications and help you through the maze. As a lovely GP once said to me: ‘Your neurologist is interested in your MS; I am interested in you.’ For neurologist, read endocrinologist/gastroenterologist and all the other -ists you have on your case.

I really feel for you, trying to deal with this decision with so many other extra factors to consider. I hope that you find a good solution that works for you.

Alison

p.s. Has your neurologist expressed a preference? Tec and Lemtrada are very different drugs with different mechanisms of action, efficacy and safety profiles: it would be reasonable to expect your neurologist to help you decide, even without the extra complications of your other conditions.

Thanks for responding Alison and your thoughts / advice.

The plan is to see if going on insulin helps (been on tablets for almost 10 years), losing some weight, exercise, sleep (I don’t sleep at all) and get the blood flowing to my brain.

Then making a decision on the MS treatment. I think my Neurologist is favouring the fusion treatment. He sold it, in that you have it done and get on with your life. Clearly it carry’s greater risk. He said 1 patient out of 400 needed a kidney transplant.

I have to see a Nurse to discuss and see him in 4 months.

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You are welcome. I must say, if faced with your choice and inclined (as you and your neurologist) to knock the MS on the head and leave you some headroom to deal with the other health challenges you face, I would go for Lemtrada too. It really is one of those drugs that can be an MS game-changer (Tysabri, which I am on, being the other). As you say, nothing is without its risks, and the greater the benefits, the greater the risks seem to be. C’est la vie.

Alison