Last reply 11 months ago
diagnosis

Hi everyone, I was diagnosed recently with RRMS. The news is still sinking in. I will start my treatment soon with ocrevus. I am a little bit worried about the side effects (increased breast cancer risk, PML) but I decided to take my chances. My doctor says I have a mild case.

By the way, what are the clinical findings to diagnose RRMS ? are lesions in a brain scan enough? could it be something else? what if the spine is fine and no oligoclonal bands are found in the CSF fluid? Is an elevated IgG index a reliable indicator for diagnosis?

As I understand it, the point of the treatment is to reduce relapses and possibly also nerve damage. I think doctors can’t really predict how RRMS is going to progress at this point, so it is better to be proactive. Thoughts?

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stumbler
11 months ago

Hi @puncta and welcome.

A diagnosis of MS must satisfy the McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria). Neurologists are usually very conservative in making a formal diagnosis, due to the life-changing impact of this diagnosis.

You’re right about Disease Modifying Therapies (DMTs). Their role is to reduce the frequency and severity of relapses. But, as you say, MS is unpredictable.

The latest thinking is to hit MS hard and fast, with the most effective treatments, to try and ensure an optimum outcome. In this respect, Ocrevus is the latest treatment to market and is already considered to be one of the best.

Good luck with it.


vixen
11 months ago

Hello @punta, nice to meet you! I got diagnosed with RRMS exactly one year ago today. The UK has yet to be granted a licence for Ocrevus so it would be great to hear from you how you find it as early reports are very positive. In the last year, I think I can divide the time since diagnosis into three phases of processing. First, cam acceptance and shock. Then, came a period of emotional, mental and physical recovery. Last, came pro-activity and a bit of realistic planning. Kind of ‘moving on’. Everyone is different and has a different experience of MS and of the repercussions, including mentally. You’re right, doctors can’t predict how things might progress. Although, if your neuro has massive experience, it becomes easier for them to say whether your particular MS is aggressive or the concept of ‘mild MS’ is a new one, does the doctor mean that your symptoms are mild?

Side effects are a worry, so there is a real balancing act required to making these decisions which, ultimately can only be made by you. Lots choose not to take the medication route. The unfairness of this disease means that one can never know if taking or not taking medications was the best decision. Anyways, there is lots of optimism and hope around Ocrevus, so good luck with the journey and do let us all know how it’s going x


vixen
11 months ago

@puncta (corrected spelling)

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