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MS medication

Per your suggestion, I have developed a thread yo further discuss whether to try MS medication after so many years without anything specific for my condition. I have seen a total of 7 neurologists in the past 26 years and until my current Neuro, no one would call my disease Multiple Sclerosis. I have gone through a plethora of evoked response testing, EMG"s, spinal tap( no oglioclonal banding) and every blood test known to mankind. Most would define it as demyelonating disease. My numerous MRI’s have demonstrated multiple lesions on my brain. The radiologist report would always say “suggestive of MS”. However no one would call it until now. I am beyond frustrated and my current Neurologist said"can’t believe no one ever started you on any MS drugs". He stated that he could start me on a medication, but didn’t know how good it would do now. It had left it up to me to decide. Please give me an opinion in this matter. I look forward to hearing from you.

Hello

I suspect that the neurologist isn’t sure whether you still have relapsing remitting MS, or if it’s become progressive. The other thing he might be thinking is about your other drug treatments (ie interactions) and also your age. I know you said you’re aged 69 on the other post. It might be seen as a bit of ageism, but given that all the disease modifying drugs (DMDs) have side effects, the question is whether it’s worth taking a drug for questionable benefits that has the potential for side effects.

Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This lists all the DMDs that are currently licensed for relapsing remitting MS. They are all aimed at reducing relapses and the severity of relapses. It’s a balance between the potential relapse reduction and the possible side effects. Bear in mind that you won’t have a completely free choice of the drugs. It depends how active your MS is, the prescribing centres set up locally to you, any contraindications between your current medication and the DMDs, your neurologists views, and lastly, your own choice!!

If you now have an MS nurse, talk to him/her about your options and what might be the best thing for you.

Good luck.

Sue

Exactly what I was thinking …I will be seeing my Neurologist in July to revisit my decision. Thank you so much for your help in this matter. I appreciate the promptnes with the response.