At last after a very long 6 week wait we now have full internet again! Must say that although it was not a good scenario pinching what little signal I could from my neighbour I could at least access e mail most of the time and sneak on here now & again
Trouble was in order to get the signal strong enough I had to lierally sit on a tall stool right in the window - I think the postie thought I was doing an impression of Norman Bates Mother!! Waa haaa haa!
Anyway - here I am back on my sofa, coffee in hand and ready to catch up with all the posts!!
I’ve been taking Baclofen 10mg three times a day and it’s awesome! I can’t believe the difference it’s making to the stiffness, the spasms & especially the hug xxx and I’m sleeping like a log!!
Too bad they didn’t give it to me 6 months ago eh!!!
I’m waiting for an appointment with the continence nurse so that symptom is being dealt with and also the MS specialist - hopfully he can help with the other stuff although the fatigue is mild at the mo as is the numbness & pins & needles xx
The only other thing is my flipping body thermostat has gone nuts again now that the cold weather has arrived!!!
My body is getting it wrong again and telling me it’s boiling hot - my poor hubby & son are in thermals & I’m in my vest top and crops again with the patio door and windows all open! I’m just hoping it doesn’t get as intense as it did!! The endocrinologist has confirmed that all my endo hormones are normal so he says it’s neurological - maybe the MS doc can help me with this horrible symptom!!
Hi Jen, nice to see you back. At least the Endo has ruled something else out…hurray!! Weather here in Spain has been vile and is also playing havock. I am sitting here with a fingerless glove on my right hand because my wrist has been really aching and weak over the last few days and my hand is frozen!! Off to make a cuppa too but only filling the kettle with enough water for one cup or I can’t lift it very well!!! Trying to keep cheerful xxxx
Morning Kirstie! keep that chin up and enjoy the tea - one of life’s little pleasures & all that!!
Yes re the endo - it’s a bit of a double edged sword isn’t it - on the one hand it’s good to get some of the other nasty possibilities out of the way - but as he said - unfortunately it just points more and more down the often unpredictable and unresolvable neurological route x
Funny you should say about your hand - my right hand is always totally freezing too - although I don’t really get pain in it like you are suffering - I can only describe the way I am as constantly feeling like I’m lying in the boiling hot humid sunshine with just my right hand in a bucket of ice!!
It’s really horrible when everyone around me wants the bloomin heating on full blast - in the house, in the car & in the shops …etc
I am so glad, although I don’t wish it on anyone, that you get my thermostat issues.
Everyone is so hacked off with being cold and I’m roasting. I go out with my blood red face and people give me the knowing oh its the change love routine.
Perhaps someone could enlighten me on here…I’m 44 and periods are regular as clockwork… I have no thermostat control at all whatever the weather (in fact heat doesnt bother me only humidity) so surely its got to be the ms???
Then it begs the question can anyone out there help us in a more practical way other than my families response of putting their cold hands on me to warm them up.
Hi Jen, yes I know what you mean. I have my next appointment with the Endo mid December, so will be interested to know what he has to say!! At least with each elimination surely it must move us closer to any Neuro disorders!!! My GP is convinced it’s MS but obviously that not good enough to get diagnosed. So we carry on down the long road to diagnosis!!! Have to go to a tribunal some time early next year for them to decide what to do with me work wise as I will have been signed off for a year in January, so that’s another unknown too. I think we should all gain a Degree in patience don’t you? LOL xxx
Kistie - never mind the degree I’d get an honorary Phd in Patience if it existed!!
Pip - I could cook poached eggs on me!! It’s really nuts & yes I get the ‘it’s the change’ comments from lots of people who haven’t got a clue what it feels like x they wouldn’t say hat to a man would they!!
on the job front it’s a little bit ‘bitter-sweet’!
I have now taken the plunge and set up my own business that consists of a project management consultancy element - and I have plenty of work lined up for this - including a good chunk with my sort of ex employer who made me sort of redundant!!!.
However I’m still feeling rather bitter & twisted about the way they made me redundant directly because of my health - and I doubt I will ever forgive them for doing that to me at one of the most vulnerable points in my life!!
But… life goes on and in some ways it may turn out to be the best thing that ever happened to me as I’m also in the process of creating an online gallery to sell my work - and also in the long term I’m setting up a homeworker agency xx
Kirstie - hope the tribunal goes how you want it to go - don’t take no c__p like I did!!! xxxxx
I was just thinking about you the other day in fact wondering where you’d disappeared too and hey presto you’re hear.
So pleased the baclofen is working like a treat. The hug can be excrutiating so I’m glad you’re in a better place now.
I got hot and cold last year - my L hand felt like I’d stuck it in a freezer and being someone who always use to sleep with my head covered I found I couldn’t sleep with my head covered anymore I got too hot (this was last winter). All this has righted itself now though. Strange!
I’m so pleased you’ve got some work. I know it’s been a hard time for you but well done for re-inventing yourself and being determined. I hope your home buisness is really succesful so you never have to at the mercy of companies like the one you worked for. As you said bitter sweet but maybe in some ways in the long run this will work out better for you.