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What happens now?

Hi,

I have been diagnosed with MS just before christmas with 5 lesions on my brain and a couple on my spine. I have had a blood test and i am waiting for a lumber puncture appointment in London. Will this then decide what type of ms i have? Does anyone know what happens next, will i need drugs dependant on what type i have?

Thankyou

Amy

x

Hi Amy,

as I understand it. Drugs are used for RRMS. PPMS is drug free.

I was first diagnosed with RRMS but 9 months later that changed to PPMS. In that time no drugs had been issued. I had a MRI and Lumbar Puncture to get my diagnosis.

All I take now are certain vitamin supplements. My condition is better now ( apart from fatigue ) than when I was first diagnosed.

Hi Amy

If you’ve been diagnosed based on your lesions, physical examination and history, I don’t see the point in your having an LP. But regardless of that, an LP will only tell the neurologist that you do or don’t have Oligoclonal bands in your CSF. It won’t tell him/her what kind of MS you have.

Generally, people are assumed to have relapsing remitting MS unless there is pretty strong evidence that you have progressive MS. Which would be having symptoms which never remit and basically just get worse. So it’s a symptomatic thing rather than an evidence based decision. And tends to be something that is decided pretty much after some time has passed following your diagnosis.

So, most people are diagnosed, either with or without a lumbar puncture and are then started on a disease modifying drug (DMD). These are designed to reduce relapses and severity of relapses. If after a year or so, you’ve had no remission, it might be that the neurologist feels that actually you are progressive. Either Primary Progressive (having never had any remission) or Secondary Progressive (having passed through a phase of RR before diagnosis).

In your situation, I’d be querying the need for an LP. Either the neurologist is certain that you have MS now or they are not. The LP might make a diagnosis more secure, but not necessarily since only 80 to 95% of people have ‘O’ bands in their CSF. So if you had a negative LP, you’d probably still have MS. But you could ask your neurologist that. (Speak to his/her secretary?) and then get started on a DMD as soon as possible.

Sue

Good question and one that I am currently pondering. Out of curiosity why are they doing a lumber puncture and blood test if you have been diagnosed already? Only reason I ask is I thought blood tests were done to rule out other conditions and you can have a negative octingual band lumber puncture and still have ms. I’m currently waiting for the results of my third mri. Been diagnosed with definite Rrms and Neuro stated that It was currently active based on last contrast mri, but was very evasive when I asked about Dmd. But as I’d just been diagnosed maybe I didn,t push it enough. So here I am waiting, again! I’m not sure if he wants to see if it’s still active. I find the whole process really unsettling. But I shall definitely be pushing more assertively for explanations at my next appointment. I don’t know if it depends on how severely you initially present, but from what I can gather no one can tell how things progress. Good luck in your quest for answers.