Last reply 1 week ago
New to MS, and to this group

Hi all,
I’m a 52 year old male just diagnosed with Primary Progressive MS. It’s mostly affecting my left leg so far, with foot drop, altered gait and weakness. I can no longer stand up from a squat on that leg, which is scary for a guy who’s been healthy, strong and physically active his whole life.
I’ve been in the Canadian military for 16 years, and am currently in the Physician Assistant medical training program. So this may end both my military, and medical career.
Not taking any DMTs, but am on a potassium channel blocker to improve function in my leg.
I’ve had 2 failed LP attempts, waiting for number 3 once I get a lumbar spine CT.
I had a bad sciatica flare up a month ago that made my MS symptoms a lot worse, and even though the sciatica calmed down, the MS symptoms worsened by it haven’t.
Waiting to be seen by PT for any input from them.
That my MS experience so far, would appreciating connecting with anyone in the same boat – older male, PPMS, to get more insight, or hearing from anyone else with MS for mutual support.
Thanks.

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highlander
3 weeks ago

@allan_harrison
Hi and welcome to the club…
There’s quite a few of us young over 50’s on here…. enough with the older bit🤫
Feel free to ask anything you like we’ll try and find an answer one way or another.
Welcome again.


watsoncraig
3 weeks ago

Hi 👋 @allan_harrison, welcome.
52 ain’t old, I was 44 when I was diagnosed in 2015 with PPMS.
Hopefully this group of folk can answer any questions you have,.Banish the word can’t from your vocabulary and ask for help! Flask for help is a sign of strength not weakness


allan_harrison
1 week ago

Thanks for the replies.
Head anyone seen improvement in function from doing physiotherapy?
I’ve had my first appointment this week, so far it looks like the PT is approaching it like any other rehab, balance exercises, step downs, single leg calf raises and squats.
I haven’t seen much online, but one of the trials is worth peripheral electrostimulation while doing the exercises. Anyone have any experience with this?
Thanks for any info or direction you can offer.
Allan


watsoncraig
1 week ago

Look at TheMSGym online and there is a Facebook page for MS exercises..
I had PT and here in the U.K. it is the best way to get walking aids. Make sure it is Neurlogical Physiotherepy you get as this differs from standard PT. Lots of balance exercises and core strengthening as that helps with balance. There is a device called a FES (Functional Electrical Stimulator) which can be useful for foot drop and can be worn during exercise for help in moving muscle, so it might be worth a shot (try any medically recommend assistance) and let us know the outcome


vixen
1 week ago

Hi @allan_harrison, welcome to Shift. I am in my fifties, although diagnosed with RRMS. How is it that you’re waiting for a LP if you’re already diagnosed? Haven’t heard of that before! My sister has PPMS and using a FES made a lot of difference with her ability to walk, even though it’s a bit fiddly operationally. At least being in the military you should be well looked after. Having coughs, colds and other ailments can indeed cause our symptoms to flare, so make sure you get a flu jab to at least tick that box. All the best, please let us know how you go 🙂


allan_harrison
1 week ago

@vixen I’ve had 2 failed LP attempts, 1 blind done by my neurologist, and 1 fluoroscopy guided by an interventional radiologist. Apparently I have a lot of arthritic bone changes in my lumbar vertebrae and they haven’t found a space to get a needle in to get a sample of fluid. Hopefully the CT will show a way through. The specialist has decided it’s PPMS based on no history of remission and no self antibodies or inflammatory markers in my bloodwork.
I am pushing for the LP, not wanting to be on DMTs until we know there’s something for them to work on, considering their side effects and hit-and-miss efficacy on PPMS.
@watsoncraig I’ll take a look at the MSgym, thanks for pointing me in that direction! I’ve booked time and a spot with leg weight lifting machines at my base gym this morning, we’ll see how that goes, it’ll be my first session there since COVID and my diagnosis.
Thanks everyone for your suggestions. How often are folks in touch with your specialist or other MS clinicians? I’ve spoken to mine once, and seem him in person once since April this year, but haven’t been connected with any MS resources, I’m left to find info and resources on my own.

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