Last reply 2 months ago
Hello Beautiful MSers

So I was on this site 6 years ago basically freaking out about how my wife (now aged 37) had received a “looks like you’ve got MS” diagnosis. She was told she’d be likely to start experiencing some kind of symptoms within 5 years or so, and lo and behold, 6 years, last month, later she has started experiencing symptoms.

So while she has been MS free for all this time, the last 6 years, to our great consternation, have been an illness-fest of outlandish proportions for my wife.

First she got a cancerous lump, it was successfully removed but it paralyzed her face, and for 6 months nobody could say if she would ever get her face back! Finally it did.

Shortly after she got a cerebral fluid leak, which gave her extreme headaches when she stood up. This lasted about 2 years until she was operated on and treated.

Then she got a symptomatic Tarlov cyst in her lower back. I can’t begin to describe how evil this is. She gets sudden flare ups every so often which make her almost completely bed bound for weeks on end and house bound for months on end in morphine-tablet level lower back pain. The last 3 years have seen her go from gradual improvement to been struck down again… gradual improvement to again sledge-hammered into the ground. And my beautiful light brown locks are now firmly grey and pasty.

And so the next chapter of out story looks like it is beginning! The joy!

I feel that her trials and tribulations of the last half decade have put her in a good place to deal with the potential turds coming her way. She has become a meditation guru, meditating for hours a day when at her worst and in doing so keeping her spirits up despite being in the most awful of situations.

She is increasingly learning to live with her Tarlov cyst, manage it as best as possible, so I’m confident that she can learn to live with MS. That said, I am under no illusions about how tough MS can be. I’ve read far too many dooming forums and in fact my misery 6 years ago was significantly exacerbated by overloading on horrendous online anecdotes from the MS underworld. On the other hand, I was placated by coming on to this forum and getting a more rounded picture about the condition, as well as by meeting real offline MSers and hearing about their lives, most of whom were doing fine, despite the adversarial nature of this poo disease. It appears many forums tend to attract the worst cases and those in their worst moments, while many other MSers are just getting on with things.

Back to the present, if you have made it this far. One question. My wife’s symptom is tingling in both feet, started suddenly 7 weeks ago and constant since then. I know there is no “this is how it will be” with MS, but is this sort of symptom likely to come and go? I have read on an MS website that paresthesia can last from “a short to a long time.” What is the most likely outcome of this? That it will fade with time?

No access to medical are by the way right now. We are in Spain and to access to hospital you either have to have coronavirus or be having a heart attack. Such sweet timing…..

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stumbler
2 months ago

@accesscrimea , I’d love to answer your ultimate question, but it equates the the “length of a piece of string”! We’re just all so different.

However, this could just be the MS “grumbling”, as it doesn’t like something that’s going on. Having read your post about your wife and her recent trials and tribulations, I should imagine her stress-ometer has been going bananas.

So, she should rest up whenever possible and manage her stress levels. Then jost hope that this latest symptom goes away.


accesscrimea
2 months ago

Thank you for your reply.

On reflection I should probably have just asked the question rather than boring people with that life story.

Actually she is pretty chilled out. Well, she was… now she’s having to come to terms with having MS… something she has denied for many years. She got ill twice in January from colds (she rarely gets ill) and that I believe is what caused it. Fair assumption?

So these sorts of symptoms don’t necessarily go away? I am really confused about the whole relapse remit thing. Doesn’t it mean that a symptom occurs then goes away? Would this, a new symptom, be considered a relapse by definition, or not necessarily?


simone2
2 months ago

Hi I have followed a diet called best bet diet for 8 years low fat gluten free and dairy free and for me if i come of it my symptoms are worse to the point I’m awake all night, i know some people don’t think diet works but it’s worth giving it a try


vixen
2 months ago

Hi @accesscrimea, your wife is lucky to have such great support and understanding from you. In your profile it still says ‘awaiting diagnosis’ so might need an update! It’s quite common to have strange sensations in the soles of the feet. I get that too, it’s weird and annoying but not painful. Sounds like she’s had a really hard time, that’s rough. Are you Spanish, or just residents of Spain? Is your wife on any medications at all? I think most of us in the UK are the same, it’s hard to get access to medical advice from GPs and MS nurses at the moment unless it’s Corona related. I’ve been diagnosed 3 years or so and also find that the remit/relapse definition is a bit misleading. In my experience since diagnosis, every day feels like a relapse as the symptoms stayed exactly the same and never went. However, it has been possible to adjust the sense of wellbeing – things like diet, meditation as your wife does, good rest, no smoking, trying to eliminate stress – and general positive outlook all have huge good effect on us. It’s good that you’ve tuned in here, as partners and carers need support too! 🙂


stumbler
2 months ago

@accesscrimea , the term Relapsing/Remitting does suggest that you relapse and dip, then recover (or remit).

However, all MS variants are progressive, so recoveries/remissions may not be 100%. There may also be residual symptoms, due to the damage left by the relapse, i.e. some scarring on your Central Nervous System (CNS). Or, a Sclerosis, as the translation of this word states.


accesscrimea
2 months ago

@vixen.

My wife’s nick is vixen too!

She is Russian/Canadian, I am British and we live in Spain.

No medications.


itsmewithms
2 months ago

To understand MS Progression I refer people to this video of Aaron Bosters. He has a great library of videos on many symptoms of MS, management techniques and DMTs. Basically all of us are the same…and amazingly different…you’ll see the more you learn.
Thanks for supporting her 😉 in these crazy times https://www.youtube.com/watch?v=fZPQ48N-nIs&t=66s

Many of us go through a period of RRMS and than a transition to a more progressive stage SPMS. That is a generalization as we are all unique…kind of a herd of unicorns ;-0

If you put “tingling” in the little magnifying glass in the upper left I bet you get some hits. Not a major issue of mine as I tend more to balance and gait issues…but my problems can not be thought to be like everyone elses!

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