Out of the Woods?

John Connor avatar

by John Connor |

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symptom, mystery

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It’s been a grueling three weeks. Birds ate my breadcrumb trail long ago. I was too tired to follow it anyway. Stumbling about has definitely been beyond me!

I’ve just shaved what had become a beard and showered, which, mixing my stories, made me feel like I’d been living on a desert island. This sudden expenditure of energy was followed by a crushing urge to sleep. The bonus being I can now at least put myself to bed and also raise myself from it!

Is it the MS? Maybe I’ve had the dreaded relapse? But I’ve also been dealing with a perfect storm of consistent urinary tract infections (UTIs), which trigger MS flares and a massive leap in trigeminal neuralgia attacks. Thus, there’s been a consequent increase in the consumption of carbamazepine tablets — one of these 100 mg honeys can literally floor me — and now I’m sometimes taking eight a day. I feel like an ’80s action hero. I may have been hit, shot, and tortured but somehow I make it to the next scene and crack a joke. It’s not a good one, maybe, but it’s the thought that counts in the face of insurmountable odds. Right?

The only positive news is that my edema has reduced slightly. My general practitioner suggested doubling the daily dose of furosemide tablets from 20 mg to 40 mg. My feet and ankles are still terribly swollen, but I now have shin bones again!

This is something of a holding piece. I’ve had perfectly clear blood cultures done, yet I come off antibiotics (I’ve been on a full dose of cefalexin since late November 2017) and I contract a full-blown UTI in three days. My doctor describes this as a “mystery.”

I hope I’m through the worst. I do feel a bit stronger. I only work once a week, but I’ve been too ill for the last three. There is every chance of MS finally stopping me, but like an ’80s action hero, I’m determined to try not to let it. I’ll think of a joke if I get there.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Matthew Coil avatar

Matthew Coil

Thank you for your words of encouragement. As I slide deeper into the abyss of secondary progressive MS after 30 years of RRMS your honesty in speaking of how things really are adds to a sense of feeling that if others are dealing with their MS, then I can also endure with style. Look forward to a better day, the warmth of spring is coming and we can look forward to walking, (falling, stumbling), again on paths once covered with snow. I refuse to surrender even though I know I feel worse than I did a year ago. Do not surrender John, do your very best with the hand that is dealt to you today.

Dave Maddux avatar

Dave Maddux

John, I am unfamiliar with carbamazepine.
what is it supposed to do for you?

John Connor avatar

John Connor

It's a drug that deals with Trigeminal Neuralgia

Merblair avatar


Have you been on any treatments?

John Connor avatar

John Connor


Sj avatar


Good to see you're improving. We miss your face on Thursdays. Carbamazapine is an amazing drug for knocking you out. I empathise over the pain of TGN. It really sucks.

John Connor avatar

John Connor

I take it your from my exercise class -
sorry don’t recognise your initials. X

Paula agate avatar

Paula agate

Yes John,,
We do miss you on Thursdays,, hurry back please,, great to see you improving,,
Please don’t forget lymphatic Drainage for your Edema,,??
All the best, Paula ???


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