Hi everyone,
Hope you are all well and enjoying the summer. Reading posts on this forum has brought me a lot of comfort this year. I’ve had a very tough time with my diagnosis at the moment and am hoping to find some solidarity or words of comfort (no pressure!) from this group.
I am 37F and was initially diagnosed with RRMS in April of this year. My main symptom is issues with my right leg, which started about 2.5 years ago. I began to drag my leg and this turned into mild foot drop that would emerge when fatigued. It didn’t seem to follow a set pattern - sometimes it would come about quite quickly, on other walks I would be ok. I was initially told it was related to inflamed nerves in my spine. That, along with a pregnancy, delayed my diagnosis somewhat. I started on Kesimpta in April.
I have always been really worried about PPMS as I have basically no brain lesions, two “significant” lesions in my cervical spine and more in my thoracic spine. The neurologist I saw initially said he believed it was RRMS with a lasting impact as I had a short period of bladder hesitancy in the past, intermittent hand tingling and fatigue and also a numb big toe that lasted for a couple of months. I am able to walk around, mostly using my baby’s stroller for support, but my right leg just never feels right any more, which has been putting me off going for any unnecessary walks.
Yesterday, however, I saw a new neurologist who raised the PPMS question. The thing is that since my diagnosis I have felt like my leg has gotten worse, with increased spasticity (although this seems to have improved somewhat) and a general ache around my right knee and hip (not sure if this has resulted from compromised gait). I was hoping this was due to stress, sleep deprivation and the heat of the last couple of months. I have also always felt like something is not right with my right hip, even though nothing is showing up in scans or assessments.
The neurologist said we have to wait and see how my next set of MRIs look in the year but, honestly, I am completely terrified and spiralling. I have a beautiful ten month old baby and I am so panicked I won’t be able to look after her or get to be the mum I want to be. I’m not sure how I can live with the uncertainty of this illness. I’ve always had issues with anxiety so it feels like the biggest kick in the teeth that my worst fears might be coming true. My partner and I also really want to have another baby but it feels like this puts a cloud over that too.
I hope this doesn’t offend anyone with PPMS. I guess I would love to hear from any others who have been in a similar situation or can offer a little bit of hope.
Thank you for reading and take care xxx
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If it’s any consolation I doubt you have PPMS, because you have been given Kesimpta to help prevent relapses and you don’t get relapses with PPMS.
It might be worth getting a physio to identify any areas of muscle weakness and suggest a programme of exercises to help build strength.
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Hi @bluebird I’m no expert but over 19 years with MS my understanding is that RRMS isn’t necessarily better to have than PPMS. Some RRMS is fast developing along with associated disability and can soon develops into SSPMS.
One school of thought is that there is no real difference or clear distinction between PPMS, RRMS and SPMS . MS is MS , you can get sudden attacks/ new lesions and it there is always ongoing inflammation and increasing disability. Anyway, there is a treatment/ drug for what is called PPMS : Ocrevus which will slow down the rate of disability and also reduce the number of new lesions ( whether in the brain or spinal cord) .
I have ‘quite a few’ lesions in my brain and although I’ve not had a scan of my cord some of my symptoms are totally consistent with cord lesions .
My MS history is that I was diagnosed after an episode of Optic Neuritis ( temporarily lost just about all vision in my right eye) and then around 7-8 years later started experiencing problems with my right leg. Over the years those problems became worse and I now use sticks, a Rollator or for longer distances a mobility scooter. Everything does now take longer to do but I am still able to do them
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Maybe I need to adopt that school of thought 
The new neurologist mentioned Ocrevus so perhaps that will be the next step for me. MS is such a minefield! My understanding was that the medication on the market now for RRMS is very effective so I’m really hoping that’s what my diagnosis ends up being.
I’m glad you have been able to adapt to your illness and are still doing things. Thank you for responding.
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Thanks so much for responding. The most recent neurologist I saw mentioned changing me to Ocrevus. I saw a neurophysio who said she believed my right hip might be a bit weaker. I’m hoping to join a gym next week and focus on strength training and swimming in the hope that this helps. Now to keep the anxiety in check!
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You’re on one of the good treatments for RRMS, so that’s a good start (well, nothing good about any of it, obviously, but you know what I mean) and quite honestly I think that’s quite enough to be going on with for now.
I am very sorry that this worry has come to cloud what should be a happy if very busy family time for you. That’s one of the things MS specialises in, given the age it likes to strike at, and it is very hard to bear.
I’m a worry-bug too, and it’s a very mixed blessing indeed when life suggest that you are quite right to be worried, dammit, and there’s not much reason not to be. All I can say about that is that life goes on, with (in your case) a baby to care for and a partner who loves you and work responsibilities and bills to pay and cars to tax and bathrooms to clean and the weekly shop to do. It all gives structure, and while it doesn’t help those frets at 0400, it keeps a person steadily in touch with the here and now, which is a good place to focus as much as you can.
BTW I have had MS for 25+ years now, and there are plenty of things I can’t do any more, but I have made a good life for myself, and so will you. I don’t know what lies around the corner, and neither do you, but then who does?
Good luck with it all.
Alison
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I’ve read your reply so many times now and have found great comfort in it, thank you so much. It is so helpful to hear from people who have been in the same position and just get it. My family and friends have been so supportive but I guess they can’t relate to the worry that comes with every little niggle. I struggled to live in the present even before this diagnosis so I guess this will (fingers crossed) be my great life lesson. My plan today is to write out a “reasons to be hopeful” list and pop it on my fridge as a reminder. And to cuddle and play with my little girl as much as possible. You are so right about needing to focus on the here and now.
I’m glad you have built a good life for yourself - that’s all any of us, MS or not, can hope to do. Take care xxx
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Thank you for your kind words - they mean a lot.
Alison
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hello @bluebird ! I’m afraid out situations our quite different, so there is only so much I can say here, but I hope I can be of some help.
my MS is not dissimilar to yours, in some ways. I was diagnosed RRMS in december last year, and coming to terms with it was (is!) a long and difficult process. I’ve lived in dread for much of the time, and had to learn to manage a difficult set of symptoms. as a previously healthy 32m, it is a new normal. a physical and mental challenge. like you, my leg can be tricky - limping and spasticity. it seems to have a mind of its own, but it has improved with cooler climate. also experience hand tingling, sometimes extreme fatigue, and pains and sensations.
what I would perhaps caution - and this is by no means easy, or something I have mastered - is letting the mind race in every which direction. any symptom will have me running rings around my self, about what is happening and what will happen. huge stress about things that I can’t know or understand in future will really spoil the present. I was convinced my left leg was deteriorating; yesterday a neurologist told me this was not the case. for better or worse, I think the best course forward is a steady one: healthy balance of optimism and realism, and concentrated efforts to avoid doom and dread-soaked thinking.
none of this is easy. I am often terrified and often spiral, but I have found mindfulness activities - ten mins meditation, breathing, attempting some discipline in thought stopping - has had some improvement. MS is to be unceremoniously dropped in uncharted waters, and then be left to learn to navigate it. so you have my sympathies, but I do believe things will gradually work themselves out, even if it takes time and patience and no small amount of mind mess.
the simple things have helped me: good sleep, good diet, good exercise. wishing you all the best
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Thanks so much for your message. I really appreciate you taking the time to share your experience. I’m sorry about your diagnosis - it is such a difficult thing to process.
I have definitely found the mental side of things the most challenging so far, I have always had a tendency to catastrophise! I had a good call with my MS nurse earlier in the week though who reiterated a lot of what you said. She encouraged me to take it a day or week at a time and try to relax as much as possible. Not the easiest thing to do but I recently joined the gym again and have been finding that a good release. Like you, I used to be super fit and active. I don’t think I’ll be able to any high-intensity training again but have been enjoying some weights and feeling a bit of control over things.
Hopefully, with time, this illness helps us to focus our time and energy on what really matters and, with treatment, we can live full and active lives
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there was something on radio four this morning you might find useful. this week’s episode of start the week was on living with uncertainty; it was a good listen. have included a link below. all best to you
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Thanks so much - I’ll check it out!