Jenny One thing that I have realised after living with multiple sclerosis for almost 25 years is just how variable it is. I was initially diagnosed as having ‘relapsing remitting’ MS (RRMS). I was never sure when the next relapse would arrive. At one point, I went a whole 8 years without a relapse, feeling great with no MS symptoms, then I had 3 relapses within 18 months. As time has gone on, my relapses have stopped but the progression of my disease has become significant.
Have I moved into ‘secondary progressive’ MS (SPMS)? My heart says yes; I seem to fit the criteria perfectly. But my health care team seem to be reluctant to provide me with this label, perhaps because there are fewer treatments for SPMS and they are keen for me to continue on a Disease Modifying Drug (DMD) to see if it can slow my progression. I am happy to try anything I can that may help, hence being on Tecfidera, and changing my diet and lifestyle through the Overcoming Multiple Sclerosis programme.
One thing I remember reading about SPMS is how the diagnosis can be a relief for some; how the certainty of knowing that they aren’t going to be suddenly struck down with a relapse really helps them to not live under a cloud of worry. However, whereas I don’t worry about relapses anymore, I do still feel apprehensive about what is potentially to come. How bad is it going to get? Will I plateau? Will new symptoms arise?
MS affects everyone in a different way; symptoms can change hour by hour, day by day, month by month and year by year. I thought that it would be useful to document how my MS is affecting me, both positively and negatively, bit by bit over a few posts. It’s easy to forget how and when things change – I know that I will have the (insert sarcastic voice here) joy of having to reapply for my PIP next year and having that written reminder can really help.
I thought that I would start today with the physical symptoms I have – not least because these are what impact on my life every day. I am currently off work due to my symptoms and I am contemplating ill health retirement. Talk about massive changes and decisions!
Physically, I am affected by:
- Heavy left leg – like having a massive bag of sand strapped to my foot, making it difficult to raise my leg. As a result I use mobility aids (crutches, a scooter) and walk strangely, often flinging my leg out in a bid to get my foot to clear the ground
- Clonus – rhythmic movements of my ankles when my leg is in a certain position (often when I am using my scooter and getting jarred by the road). Disclaimer – this is NOT my leg! 😂
- [youtube https://www.youtube.com/watch?v=XVlo1IB-DAc&w=560&h=315]
- Spasms and cramps – I am currently looking into alternative medication to Baclofen to help this – I am woken by painful cramps in my feet and toes and have spasticity in my right leg, I guess because of all the extra work it has to do in lieu of my left
- Poor balance – check out this bruise, acquired by stumbling into the bath ledge whilst attempting to get into the shower:
- Weak left arm and hand – impacting on my ability to type for long periods or to lift cutlery for sustained periods
- Fatigue – the feeling that no matter how much sleep you get, it is never enough. Naps are a necessity to help me function. Fatigue is my number one reason for struggling with work – it brings on other symptoms such as concentration difficulties, word-finding difficulties and memory lapses
- Flushing – sudden reddening of the skin as a result of my Tecfidera use. There doesn’t appear to be any rhyme or reason as to when it occurs but it happens about once a week or so
- Heat intolerance – very well known to MSers – I have had to wave good-bye to hot sunny days and hello to shade and cold G&Ts (so not all bad!) I am also affected by cold, for example getting into a cold swimming pool can set off my spasticity
So, these are the the things that come to mind when I think about how my MS affects me physically. I would love to hear how it affects everyone else – is your list the same?
My husband as you might remember has PPMS and he suffers the heavy leg/dropped foot thing (uses a dual circuit FES which helps!) and the clonus and spasticity, which can get really bad in the left leg. The heat recently has been rubbish for him. He tried baclofen but didn’t get on with it so He’s on gabapentin now. He’s just taken part in a drugs trial to help with spasticity, he’ll get full results in the autumn. He was pleased to take part as there’s precious little research into PPMS. Balance is the main thing, probably because of the dropped foot so there’s a lot of falls. He used crutches mainly in the house and his office but anywhere else he uses the wheelchair. The chair is the thing that gives the most freedom. We can get pretty much anywhere. 😀
Yes, I was reluctant at first to use my scooter but it affords me so much more freedom than without. Fingers crossed for the trial! I am awaiting FES but I think that I don’t live near to any centres that offer it so I am on a waiting list somewhere, glad to hear it helps! I should push for it. I’ll look into the gabapentin too, thank you. 🙂
I started baclofen about 2 months ago and seems to be ok, also started sertraline (anti depressant ) oh my goodness what a difference to fatigue and very oddly i have also stopped snoring !!!! What on earth is that all about…..husband is delighted x
Oh wow! I am also on an anti depressant (citalopram), haven’t noticed a difference in my fatigue, but have only just started so fingers crossed!
Fatigue/brain fog is definitely the worst symptom for me too and also stops me working. I recently applied for ill health retirement and was so surprised and relieved to be approved for the enhanced amount. I can’t tell you how much stress this has removed from my life and although at times I do feel a little ‘written off’ I try to accept the reality of the situation and feel grateful that I can look after my health and stop (unsuccessfully) trying to force my body to do something it’s no longer capable of! Wishing you all the best with whatever you decide x
Thanks so much Natalie, that is so positive to hear. Occupational Health keep asking me to try different things e.g adjusting the days that o work but I’m not able to reduce hours so I don’t think it will make a difference. I’ll try anything though if it means they can’t argue against ill health retirement! Xx
that sure is a lot to deal with. i dont have ms but i really feel for you. i hope your symptoms arenttoo bad today. xx
Thank you so much – you get used to it and adapt as needed 🙂 Good excuse for a nap 😴 xx
Same reason I don’t have the a SPMS label so I can continue with disease modifying drugs. Without the drugs I will have a relapse we believe or at least that’s what happened 3 years ago. However, I continue to get worse regardless. Feel goo Jen keep fighting 💪🏻
I found this really interest as don’t know a great deal about MS. Thank you for sharing 🙂
Thank you for reading! 😊
Hi
Really interesting to read about your symptoms. So many are similar to my symptoms – tho I don’t get the ankle tremors.
Firstly I wanted to write about the labels around our disease stages. My DMT neuro has indicated my relapses might be slowing now – due an MRI to establish any recent activity. However, i don’t really want to accept a label because I’m of the opinion that my disease progress is v unique to me. The label adds nothing really.
The invisible symptoms are the most difficult and the unknown for the future as to what will happen and when. However, I say this having had a fairly recent interlude with cancer …. and the CBT coming out the other side of that has helped me handle uncertainty better than before the cancer (why do we need a cloud to find a silver lining?).
All we can do is keep a positive mindset and, on your case, document and blog about it.
Please do keep writing!
Thank you so much for your comment. You are absolutely right about the fact that we don’t need labels, MS is so individual, why worry ourselves with something that is pretty irrelevant? I am sorry to hear that you have also had to deal with cancer.
I have thought about CBT, i have heard very good things about it. I have recently started a course of anti-depressants and my plan was to get a referral for CBT to help alongside it. Blogging definitely helps too.
Thanks once again and wishing you all the best x
Thankyou for articulating so well the names of our symptoms and a thorough description! I am RRMS, and with no new lesions I am pretty stable , however the symptoms I do have are not going away, such as the right leg weakness, muscle spasms, and my right hand weakness and pain if I over do it from typing at work. Balance in our lives is certainly a challenge lol in more ways than one!?
So glad to hear that you are stable, but frustrating that your symptoms are still there!
Sorry, pressed reply before I was finished! Balance, in many different ways, is a challenge! Thank you so much for your comment 😊
Very similar to mine. I am losing the ability to type. This,coupled with not walking is so harmful and I loved the beach and hot baths
Fatigue, fatigue, and fatigue. :)…muscle pain, nerve pain, and heavy left leg for a few days, usually after injecting. And those bruises!. Always a joy to try and remember how they got there!. So, a lot like yourself, I eat well, do yoga, meditation and nap when needed…keep smiling.x
I have a lot of the same symptoms. I have strange numb spots that crop up on my torso with small pin points in the middle of them that are ultra sensitive. Heat is a big trigger for me. I live in Texas, US so I don’t even go outside most of the year. It’s kind of depressing :(. I’ve been having mood swings too, which I’ve heard can be MS caused. I get really angry suddenly and without prompt. There’s brain fog and other things, but these are the main ones.
Yes that definitely sounds similar to mine! I too get little ‘sensitive spots’, especially if I am run down. We were in Florida recently and the heat there wasn’t great for my MS. I’ll bet you appreciate air-con!
The greatest invention 🙂
fatigue, heavy leg after Plegridy injecting, vertigo, and ahh, the bruises! Always a joy try
ing to remember how that bruise got there!. Keep doing what you’re doing btw, and keep napping. 🙂
Thank you I will – yes love the random bruises! Sorry to hear about the vertigo, I get it very occasionally, must be horrible having it a lot 🙁
Reblogged this on Dream Big, Dream Often.
Thank you for this, Jen! You took the words right out of my mouth, give or take in that I take Gilenya and (thankfully) don’t suffer from fatigue quite as badly as others / you seem to, so am still working. Needing to climb stairs on a daily basis is proving an increasing challenge, but I’m forcing myself to take it! Am hoping that when I get back to exercising regularly and being stricter about adhering to the OMS regs, I will feel better again. What I am enjoying (thoroughly) however is getting deals on theatre and concert tickets as I’m using a walking stick 😉
Keep the posts coming!
Thank you
Bettina xx
Thank you so much Bettina! Well done you on keeping with the stairs, try and keep at it! Xx
Thank you Jan, for sharing! When I was on Techfidera I took a baby aspirin each time I took the Techfidera and it eliminated the flushing completely. But then my white blood cells decreased to a dangerous level and I have been off Techfidera for about a year. I had a neighbor when I lived in Washington who was on baclofen 70 mg three times a day. I don’t know how she stayed awake at all. But she went to a baclofen pump and that really helped her. Since I have very little background of medical information since I was misdiagnosed for so long, I was initially diagnosed with our RRMS, just so I could begin medications. But my current neurologist, in looking at my history, believes that I actually have PPMS. I always thought that PPMS was going downhill really fast really hard. And that is not what has been my personal experience. That’s why I was misdiagnosed for so long. So I’ve been approved for Ocrevus, just waiting for the infusion center to be ready to administer it.
Hello Jen, thank you for your share. It felt as if I wrote it, really, I know how it all feels, sorry about it. I will start Ocrevus in 2 months as per my doctor’s advise. I have additionally facial numbness which can be pretty annoying. Will be following you. Sinem 🙂
Thank you so much for your comment! I really hope that the Ocrevus goes well for you, I’ll keep my fingers crossed. It isn’t just the uncertainty over whether these meds work or not, but also dealing with the side-effects I guess. 🙂 x
[…] but it has been a hell of a lot more difficult to start than my previous one in this series (This is my MS – physical symptoms). It was easy for me to write about the physical symptoms of my MS – I am at the stage now […]
Hello Jen. Lovely to meet you. My sister works for the MS Society and there is a high prevalence here in Donegal. Thank you for the follow. I look firward to following you. 😊
Thank you so much! I loved your post on 10 tips for living with Fibromyalgia – so much good advice and I really try and live to appreciate the little things too 🙂
Thank you. Wishing you a lovely week.
[…] is my last blog post in the ‘This is My MS’ series (see here for my post about my physical symptoms and here for my post about my mental health). I know that I am very nosy eager […]
[…] all about the physical symptoms that I experience as someone who was diagnosed 29 years ago. I last summarised my physical symptoms in June 2017, when I had not yet been diagnosed with secondary progressive MS, but I suspected that I did have […]