Strange sort of PPMS/RRMS


I am new to this forum and would like to introduce me and my very strange kind of MS (well, isn’t any MS strange, I know…).

I had my first “episode” in 2009. Blurred vision, nausea, tingling and weakness everywhere, oligoclonal bands, but only dots in MRI. The symptoms grew worse over a year and then somehow plateaued and settled down. I kind of forgot MS, maybe because it was so traumatising to have symptoms that esp neurologists wouldn’t acknowledge. It was like: “Yes, you have MS, but just imagining up the symptoms”. We had a baby in 2012, and in 2014, out of the blue MS-symptoms started again. It seemed as if they just picked up where they had stopped and grew worse from there, this time plus loss of feeling for bladder, more weakness and pain. This time round, the neuros could see a 4 mm lesion in my neck spine that enhanced a little bit of gadolinium. Like in the episode before, steroid infusions or tablets never helped. The only thing that was beneficial, extremely but only for short, was an epidural steroid-injection, which they kind of specialize in in Germany. Highly recommended, but not a nice procedure! Anyway, nothing really helped in the long term. Only when I had my hormones balanced out through HRT the symptoms started to lessen and finally completely disappeared. Blocked out MS again and had another baby in 2016. No problems whatsoever, and now this summer (2020): Bang, MS is back. Nothing to see in Head or complete spine MRI, but symptoms get worse and worse with lots of pain and increased weakness. Esp the latter scares me a lot, as it’s in both legs and both arms. Yet, I have still no visible disability, just that my kids suddenly find me extremely clumsy and lame.

Again, I don’t understand how I could block out so entirely that I have MS… In hindsight, obv, the pregnancies will have helped, and the long times of breastfeeding. In both cases, exactly 1,5 years after weening my kids, symptoms started again and progressed. But Ms had certainly stabilized before the pregnancies, otherwise I wouldn’t have dreamt of having a baby.

Why am I telling you this? I don’t know! Yes I do. Firstly, I would recommend to Fellow-MSers with esp PPMS to get their hormones checked and , secondly, just want to mention that epidural steroids seem to help a lot of PPMSers and SPMSers in Germany, esp with spine lesions.

Also, I’d be really interested if anyone’s heard of such an “inbetween” case of MS like mine, with strict progression over a year plus, then complete remission, and then picking up were it had stopped?

Thanks for reading all this! I hope you are all having a good day!


Hi Wilmaa!

I have often read that during pregnancy, MS take a break…but like you say, bounces back and lets you know it`s still there!

MS is such a clever, sneaky devil…it can pop up and disappear without rhyme nor reason.

Not heard of anyone having epidural steroids in UK. If anyone has, I am sure they`ll be along soon to say.