I was diagnosed with RRMS in October last year (28 yo) found out I was pregnant in February and hoped the surge in hormones would protect me as I hadn’t yet started treatment. Unfortunately that wasn’t the case and I had a relapse last month which has hit me differently. Thankfully I don’t have mobility issues, my lumbar puncture was negative, which I understand is rare but does still happen. I was working on the basis that I wouldn’t start treatment until after baby but I now understand Tyruko is considered safe during pregnancy until 34 weeks and so I have had my first infusion, second one coming next week.
My perception of how MS is affecting me after my second relapse is hugely cognitive. But I’m not sure if it’s MS, pregnancy, a combination of both? Cog fog, memory, concentration, overwhelm, my brain just isn’t working how it used to. My mental health is really suffering and as a result I have now decided I need to take some time off work to prioritise my mental health ready for my baby (#2) and for myself.
Questions I have which I would really appreciate some input on please:
- Can MS exacerbate existing Mental Health conditions? Anxiety, depression?
- Are these cognitive symptoms now a constant in my life? I had nystagmus with both my relapses but this seems to have resolved, after a week in hospital and steroids. I don’t know which symptoms will be a constant vs those that occur when I have a relapse (which hopefully I shouldn’t now I have started treatment right?'.
- Should I expect mobility issues down the line? Even though my lumbar puncture was negative.
If you’ve made it this far, thank you so so much!
Charlotte x
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Hi Charlotte
Sorry I don’t really have any answers but firstly congratulations on your pregnancy. Reading your story is similar to mine. I was diagnosed in 2008 and pregnant. My son is now 17 and daughter 13. I’ve suffered nystagmus also it ain’t nice. I’ve had an assessment recently for cognitive and get the result next week. I just wanted to say try and stay positive and live each day as well as you can. Also enjoy your pregnancy (I didn’t as I worried so much and I deeply regret that) Take care and good luck xx
Also you might have baby brain to add oto the mix and your emotions will be all over the place with pregnancy and recency diagnosis x
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Thank you for replying! What was the cognitive assessment? I had something through occ health but that was when I was first diagnosed but feel like the last relapse hit me differently
Hi Charlotte and blimey, you certainly have a lot going on in your life!
I’m a 72 year old guy and no medic so not best placed to answer some of your questions but:
On mobility issues - I’m 72 and was diagnosed some 19 years ago. For years (8-10) I didn’t have any mobility issues at all, that changed slowly to not being able to walk for more than 30-40 minutes to my current situation of needing a stick and, for longer walks, a mobility scooter. I still walk around the house unaided , cook etc etc
On mental health- depression and anxiety are more frequent in people with MS than in the wider population but by no means do everyone with MS experience either. My thinking is that a diagnosis of MS is itself enough to get anyone down , some treatments can affect mental health and , if I were you I would give myself a bit of time to let thing settle down and to allow yourself an opportunity to come to terms with it all. In my case I’ve got myself some counselling from time to time to help work through things.
Like many others I also take Citalopram- been on it so long now that it’s pretty much just part of life.
On cognitive issues- this is just my guess but I wouldn’t be surprised if what you are experiencing is a result of a combination of everything, perhaps including Tyruko ( have a check). In my case I struggle with thinking etc when it gets warm and for 1-2 days after my weekly injection of Avonex.
On the positive side, at 72 and after 19 years of MS I don’t think my cognitive abilities are too bad. I test them every now and then through an online test on Food For the Brain and there is a harder , more thorough test on The Great British Intelligence Test run by Imperial College London .
Finally, have a look at the Website of Overcoming MS ( living well with MS) which in addition to advice and guidance on diet and exercise also has sessions on Mindfulness which is good for general mental health, calming the mind etc.
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I am so sorry that an MS diagnosis has crashed into your full and active young life.
I don’t know the answers to your questions, but I think it’s safe to say that most of us struggle to take things in our stride after an MS dx - it is one of life’s biggies. Maybe people in generally robust mental and emotional health sail through or at least do better - I wouldn’t know about that.
Natalizumab is a very good treatment in my experience. I’ve been on it many years now and it has stopped my very active RRMS in its tracks. I wish it had been available when I was first diagnosed, but better late than never.
I hope that life calms down for you and you find time to heal and come to terms with all the big changes in your life, the good ones and the bad ones.
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Hi Charlotte,
I think that depression and anxiety are more common in people with MS than the general population. I think Dr Gavin Giovanoni (spelling?) did a post on it in his MS Selfie blog, which is worth a look if you are so inclined.
An MS diagnosis is a lot to come to terms with and can take a number of months, if not longer. No wonder it affects us emotionally - it’s huge!
I think the MS selfie blog also said that some of the changes in our brains caused by MS can also cause us to feel depressed, but don’t quote me on that.
Your MS nurse may be able to refer you to specialist counselling if you ask them. Lots of MS teams include a psychologist.
I wish you well with your pregnancy and MS treatment.
Go gently
Alison
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