Last reply 2 months ago
Recently diagnosed – Going on Ocrevus

Hello Shift.ms!

I am a 28 years old male. I was diagnosed PPMS two weeks ago after a rather long period of uncertainty. Because drop foot was my only symptom (what about low libido?), nobody around me actually though I could have MS.

After an MRI, evoked potentials and a lumbar puncture together with no relapses —> PPMS.

I’ve been suffering from really low libido for the last year (something not normal for me 5 years ago), and a sense of weakness on my legs. Do you think ocrelizumab will be able to make me feel better? What about sexual apathy? Will my legs feel any stronger?

Is there any life habit you’d suggest for me to change now that I still enjoy good neurologic function?

Pd: I work at a pharmaceutical company and I know quite a bit about available MS treatments. Lets hope for the EMA or FDA to approve either a remyelination therapy or a stem cell treatment for MS in our lifetime!

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mlgilber1
2 months ago

Hey! I also experience the “drop foot,” low libido, and weakness in my legs. I recently had a bad relapse and couldn’t move or feel my left leg. Plasmapheresis helped a lot and I could move it again, but it’s still super weak. I will also be starting ocrevus, just waiting on insurance approval so I can hopefully get started soon. I hope everything goes extremely well for you!


stumbler
2 months ago

Hi @fxms and welcome.

Ocrevus (ocrelizumab) has been able to reduce disability progression in PPMS in trials. If you can stop the progression, then your neuronal reserve may be able to recover some lost function. In this respect, you have age on your side.

Life habits for good neurologic function? Live healthy, eat healthy and avoid stress.

Here’s a booklet regarding sexual problems for men with MS :-

https://support.mstrust.org.uk/file/sex-and-ms-men.pdf


vixen
2 months ago

Hello @fxms and welcome. You’re off to a great start, as Ocrevus isn’t yet approved for PPMS in the U.K. and I’m sure stem cell therapy will advance greatly in the next decade or so. My sister has PPMS and uses a FES machine to help with her foot drop. We are all living in new and exciting times in terms of research and development so it’s good to maintain a positive outlook. I’d say that diet is a top priority with being diagnosed, as well as regular exercise that doesn’t push the limits. And just to say, good luck with your libido quest!


essence
2 months ago

Hi. Can you find a doctor with a special interest in hormones and wellbeing cycles. I have seen one who tested my testosterone (and I am a female – even we need some evidently!!) which was unusually low for my age. I now have a testosterone implant, which has helped muscle strength, energy, sleep and “libido” 😊.


fxms
2 months ago

Hello everyone!

Thank you all for your responses.

@mlgilber1: good luck with Ocrevus to you too! Great things have been said about this drug. Let’s see how it goes…

@stumbler: what a great guide! I didn’t have time to go through it all, but I will this weekend. Sometimes I think my low libido is not associated with my MS but with mild depression, anxiety and a really bad break-up I experienced a year ago… not sure.

@vixen: Ocrevus is not (yet) approved for any use in my country… but I will be traveling to Spain to get the infusions. I will definitely research about FES machines.

@essence: yep!, never actually got my hormones measured. Might be the problem… Good luck!


gijs
2 months ago

Also, you know, consider the psychological aspects of it all, when I was ‘pre-diagnosed’ 12 years ago, I’d completely forgotten about sex for the whole year, and I was 26.

In my case – due to the MS ‘hiding’ for the next decade – it was completely psychological (as it can also be with neurological symptoms, sometimes with MS patients, who are overly focused on their bodies. )

Measuring hormone level is not a bad idea either.

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