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Feeling lost

So in January after numerous MRI’s I was told it’s 90% likely I have MS, I had my lumbar puncture today which will officially confirm it, I’m feeling so low, Christmas Eve my vision went funny & I’m seeing double, had steroids but vision still isn’t right & I have prism on my glasses. This year me & my husband we’re going to try for our first child & I feel like this has ruined everything, everyone around me seems so happy & I’m so bitter & angry, I know I sound awful & I know there are much worse things about but I’m just lost, I’ve got to think about treatments & I just want to cry. I’m 32. Has anyone been in this situation or going through the same thing? Be so nice to talk to someone who understands & doesn’t think I’m crazy. Thanks.

Hello Kim-Jade

How sudden this has been for you. I’m so sorry. Many people have to wait and wait for appointments and tests, then results. So to have a diagnosis (almost) within a couple of months is incredibly fast. And must have your emotions spinning all over the place.

The lumbar puncture may well put the tin hat on the diagnosis, but to be honest, MS can be diagnosed without a positive LP. So the chances are, if the doctors have told you it’s 90% likely, then it probably is.

The good news is that today there are many disease modifying drugs (DMDs) available which can reduce the number and severity of relapses. There is even one drug that it’s possible to take in pregnancy I believe (Copaxone) but obviously discuss this with your neurologist. It may be that the neurologist would advise you to have a child then start a DMD. Or to take a higher category DMD (one that you take over a couple of years but then stop), then have a baby. There are risks involved in all drugs, but with MS DMDs, the risks are balanced by the benefits. You just need to get that final diagnosis, then have some full and frank discussions with your husband, your neurologist and the MS nurse.

Bitter and angry seems like a perfectly reasonable response to this unwelcome intrusion into your life. I don’t blame you in the slightest. You may also feel very sad, almost grieving for the way you thought your life was going. Having MS does not mean it’s all over, you may just have to change a few things. And no, you’re not crazy.

Best of luck.

Sue

Thanks so much for your reply. You are right with how quick my diagnosis was as I only started having problems in October & it seems pretty certain it is MS, in that regard I have been lucky. My neurologist said the two options of treatment I have is copaxone as you say or a drip that you have for 5 days & then 3 days across 16 months, I just need to think about what option is best, it may be I’ll try copaxone & see what happens. Next appointment is May so I’ve got awhile, hopefully between now & then nothing else will happen- touch wood. Thanks again for replying, it’s just nice to talk to people who understand.

Ooh your neurologist is talking about two drugs from completely different ends of the spectrum.

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

The second drug he’s mentioned to you is Lemtrada. It’s a bit more risky, but the potential benefits are amazing. Some people do have to have a third course of the drug, and some people have had some iffy side effects. But if you’re one of the lucky ones, it’s as close as you can get to a cure (don’t get me wrong, it’s not a cure, but it definitely is the best drug available).

Copaxone is in my opinion, the safest option. Most people have no side effects or virtually none. You just have to be prepared to inject yourself, but it’s a titchy little needle that just goes under the skin. So long as you rotate inject sites you’d be fine.

The big difference is average reduction of relapse rate, 70% for Lemtrada and 30% for Copaxone.

But I suspect your neurologist is offering you exactly the right options.

Best of luck with the next few months, getting used to the idea. Hopefully you’ll be relapse free. Come here if you have questions, the least we can do is point you in the direction of reliable information and tell you about our experience.

Sue