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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