Head and shoulders, knees and toes : Fampyra diaries 3

Well, I'm a shower of sh** today, as my charming ex-father in law would put it.

On Fampyra now for several months, and I am walking better. Is it the Fampyra? Who knows.

I'm also having a lot more spasticity in my muscles. Fampyra? Who knows.

Last several days, my legs and feet and bum have been very unhappy with one thing or another. Twitching, spasming, my toes curling up or just painful and very touchy. Shoulder was damaged in another incident, so I'm hobbling along, a mass of unpleasant sensations with no where to put them.

I've taken to using my rollator if I have any distance to walk. Sigh. Sexiness quotient = 0.
Of course, staggering like a drunk leads to entirely the wrong sort of attention. Tough call...

So, slurping bafclofen and my medMJ and hoping the pain goes away soon.
Frustratingly, sometimes it does, completely, for, like, ten minutes, and I can walk like a normal person and my hips and knees stop complaining. Then the mask drops back down again and I am writhing.

I suspect a new lesion in my spine...maybe some compression there? As we all know, it's foolish to diagnose yourself, but so much of chronic disease management is just that.

Keeping on with Baclofen, Fampyra, and now back on Cymbalta to deal with the depression caused by the holes in my head. Maybe it will help with pain, too - it did before. Polypharmacy, here I come, yet again.

Am paying for my Fampyra now after getting two free sample months. Don't know if the benefit is worth the cost. will have to consider when this batch is done. It DOES seem to be disturbing my sleep pattern.

Pain and MS, including those with an axe to grind

Oh legs. Legs'o'mine. Couldja leave me alone just for a leetle while?
I still don't get it - why is there so much numbness plus so much pain? Surely they should block one another out?
But no, here I cringe, legs repositioning every few minutes while I struggle to feel my fingers on the keys.
I do wish I understood this disease better. I wish anyone understood it better.
And thanks, CCSVI advocates for once again sending me an unnecessarily long and gruesome post to my CCSVI, the terrible temptations post. Every few months you send me one. It's tedious.It's advertising, pure and simple. Usually I delete the comments, made as they are by some mailing robot that spasms, like my legs, unexpectedly, and shoots out blather.
I've decided to allow this one because we are at the point of doing a study here in Canada that looks like it will be carefully designed enough to actually give us some answer, unlike all the observational studies done before. This study will assign patients with venous "obstructions" to control and experimental groups and do mock procedures on the controls. Everyone involved will be blinded as to who got what procedure. then, a year later, the groups will be switched, so everyone will end up with the procedure (important as it is an invasive experiment) and the same person can be evaluated throughout the experiment for effects. I don't know if they are following the procedures with physical therapy, my own personal thought about how the benefits are accrued from the procedure.
So in two years, we should have some hard research results.
Best thing is that the doc who is leading the study, while one of THOSE( neurologist) types, is also one of the most caring, considerate, and thoughtful neurologists I've happened to meet. I've worked with him on the Canadian MS registry project through CIHI and he is a good man, not given to self-aggrandizement, prone to listening to ideas, and open and easy to speak to. I'm hoping the centre in Montreal is going to be led by my other favourite neurologist, another gem of a doc. I'd mention their names but I don't want them to be swamped with people demanding care to the point they burn out. Nice neurologists are not common out there. tremendously smart and knowledgeable ones, yes, but pleasant and friendly, not so much.
Perhaps, unlike my numbness and pain, niceness and smartness don't normally occur together.

But in some lucky or unlucky instances, they do.

How does one say goodbye?

I'm feeling pretty damn blue this morning. And angry. And frustrated. And just plain fed up.
Part of it is, I'm sure, the overlay of fatigue I've been dealing with for weeks now, so heavy it is like a Nova Scotia weather forecast - alternating between foggy with sunny periods and sunny with foggy periods.
But the deepest indigo is about my dog.
Chutney. Sweetest poodle ever, but still a puppy, given to scrambling off after interesting smells, wanting to play, demanding attention and love. As my walking capability has rapidly decreased to where it is a rare day when walking seems like a good idea, Chutney becomes more of a problem. He knows I'm in pain. He follows me around, holding a toy, looking at me sadly with his brown eyes. He foolishly has to pee and poo, and today, when ice covers everything, the near miss of falling is scary. I can't see managing a puppy and a walker together. He's strong enough to pull me over.
Initially I thought I could handle having a dog. I got Chutney as a statement of hope. I was moving to Nova Scotia, my life was moving forward, I just knew I'd be better in a more temperate climate, instead of suffering through the heat of Ottawa summers. I knew there'd be beaches for Chutney to romp on.
What I didn't know was that I wouldn't be able to easily walk those beaches, that pain would accompany me everywhere, that my leg spasms would become so significantly worse.
Chutney isn't without his faults. He knows when I'm too tired to play and he uses it to be bad. He whines if I don't pay attention to him and he costs a fortune in doggy daycare costs I can ill afford, but feel I must so that he gets some sort of quality life. The cost in treats alone is harsh, but he needs things to chew, probably because he is so frustrated with having to watch me sit about all day.
So, it's time for us to part. I have a friend who has a friend who has found him a home with a yard to run in, another dog to keep him company, a healthy family that can play with him and take him places and afford the food and toys and such. I'm hoping they like each other and that I like them, cos I won't send him away with anyone I don't like.
But...I am broken-hearted. To go with my broken, broken body.

OOH, me aching bum...

I'm beginning to hate my "trunk". You know, the place where you put the "junk".
It seems to be giving me a fair bit of trouble. Started with back of bum spasms when I walk. Not pleasant, but I got used to them. Then the front of my thighs started in on the game. Cool, I thought. At least I'm balanced.

Then my inner thighs. Now that was weird feeling. They kicked in at a meeting and I had to rub them secretly under the table which of course made it look like I was distracting myself in an impure manner (as George Carlin would say).
So I just pushed on them and tried to persuade them to let go. They still haven't. They won't let me put my legs together, so I sit like a 50 cent tramp. As my grandmother would probably say. Good thing I wear pants. Good thing they don't have holes in unusual places. Good thing I'm not working anymore.


Now we're going for nerve pain up and down the super secret place. It's hard to feel elegant when you are hissing through your teeth to avoid screaming. Hot needles. Long hot needles.

It's MOST annoying as otherwise I'm completely numb "down there". It seems unfair. Either give me it all or take it all, right? Half and half, when I only get the bad half is nasty.

Was bad enough yesterday to surf on serious drugs. Fortunately today the needles are only occasional. I'll be sitting, completely comfy, when one shoots up my unusual location.
I'm frightening the dog.