Rant about lack of steroids

Hi all. I’m a 37yo female with MS and a new mother. I was diagnosed in 2014 but I’m almost certain I’ve had MS since about 2006. I am currently on Kesimpta but have previously been on Copaxone and Fingolimod and briefly Avonex when I became pregnant (as many of you will know, Fingolimod is not good for the foetus).

Sorry for the long and frustrated rant, but I just need to get my rage out somewhere where others get where I’m coming from.

As alluded to in my intro above, I waited for a long, long time for a formal diagnosis. I experienced partial blindness and eye pain aged 18, which I now believe to have been a classic optic neuritis flair that signalled the start of my MS. Over the years between this and my diagnosis in 2014, I went to doctors many, many times to report leg weakness, unusual falls, bladder dysfunction etc. For context, I live in the UK and our national health service - though a point of pride for many, including myself - has been aggressively underfunded and poorly managed for years.

I came to suspect that I had MS but was told that I was being overly anxious and that I shouldn’t go on google so much. Because I was also experiencing anxiety and depression at this time (albeit mostly because I was worried about my health and felt isolated), I was told by more than one doctor that my situation didn’t require investigation but that I needed to work on my mental health. Eventually, out of sheer frustration, I went private and was diagnosed within weeks after a spinal tap.

I have been fairly resilient in managing my MS since. I experience some mobility problems (foot drop, weakness, poor balance) though didn’t require a walking aid. I also experienced urinary urgency and frequency. In short, although I have found MS a complete bastard, I became very strong and focused on continuing to pursue a fun and meaningful life - although obviously one with some restrictions and frustrations. I was also fortunate enough to find a partner who was extremely supportive, positive and non-judgmental about it (perhaps because his mother also has MS). Aside from my first bout of optic neuritis, I’ve never knowingly experienced a relapse and my MRIs have been fairly stable, for which I am grateful.

I have, however, had an extended recent experience that has really, really upset me and is affecting my mental health. I would venture to say it has triggered some of the bad memories I have about not getting diagnosed for years.

After I gave birth to my baby in December, I suffered what I now know was a postpartum relapse. When I was pregnant, I was on crutches for the last three months because I had bad pelvic girdle pain, which, together with my poor balance, made me feel scared to walk without support. Because my relapse came in January, hot on the heels of the birth of my son, I assumed that I was merely deconditioned following three months on crutches and that it would take me a month or two to get strong and get off the crutches. As I mentioned above, I have never had a definable noticeable relapse before, so I wasn’t on the lookout for one. My MS nurse saw me on my crutches a month after my baby was born and said she also thought it was deconditioning.

With a brand new baby and very unbalanced and weak on crutches, I struggled daily to cope, unable to do so many of the things I needed to do. I struggled to walk around the house without grabbing furniture and walls. I couldn’t even walk with the pram as a support because I was so weak. I started to become increasingly sad and isolated. Nonetheless I laboured under the misapprehension that I was merely deconditioned and so did daily exercise and weights to try and get stronger. By March, it was time for my annual MRI. This revealed that I had had a pretty big relapse. I was surprised but also relieved that finally I had an answer as to why my mobility had taken such a downturn. It took two and a half weeks for my ms nurse to get a prescription of steroids for me.

Initially, I did amazingly on these and by day three, was almost walking without my crutches. However, by a week after my final dose, things had almost gone back to how they were before. I was so disappointed, because I had initially experienced such gains on the steroids.

Since this, I have had to seriously fight to get the attention of my MS nurse, explaining to her that I am still on crutches, still unable to walk without them, still seriously struggling around the house with my new baby. I have had to convince her to give me another dose of steroids, explaining to her that I had no significant side effects on them and that they appear to have helped at least a bit in bringing some inflammation down. She agreed to prescribe another dose but again it has now been two weeks since we spoke and no prescription has come through. I have tried to call and email her but nothing.

I feel so abandoned. I should not have to wait for a simple, clinically proven medication when I have been experiencing a relapse for nearly six months. I feel that, as soon as I came in on crutches to see her in January, she should have investigated a relapse rather than waiting for three months for my MRI. Am I being unreasonable because I am struggling? Any advice welcome.

Thank you for reading this X

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That’s absolutely disgusting, I’m sorry to hear this! I was diagnosed in December, and relapsed recently but was given no information on where to go when this happened! My neurologist hadn’t informed my doctor of the diagnosis, and couldn’t get an appointment let alone treatment until 2 weeks later. Unfortunately unable to obtain methylprednisilone till next week! There seems to be a real lack of support for those who need it unless you kick off! You shouldn’t have to fight for treatment, but unfortunately you do otherwise you’re left to struggle.

I would put a complaint in and they have a duty of care.

I understand that your first priority is more steroids to help get you back on your feet. But beyond that, I do think you needed to discussion with your neurologist about whether your current DMD is up to the job. That’s the big issue longer term.

I am sorry that you’re having such a difficult time and feel unsupported by your healthcare team.

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