Hi from Wales

[Hellvis]

Hi, my name is Eloise, I'm 26 and I live in South Wales UK with my hubby and our border collie Cass.

I was diagnosed just under 6 months ago after being mis-diagnosed with Narcolepsy. It turns out that I've most likely had MS since I was 18 when both my legs went numb.

My predominant symptoms are fatigue, all over pins and needles and numbness and weakness - mainly in my legs. I can't stand up for long as my legs go numb and give out on me.

I quit my full-time job just after my diagnosis and went part time working evenings. I also help my hubby with his dog walking business - I do one or two hours walking a day at my own pace. It's tiring but it keeps me active. I'm also planning on growing my own veg this year to save some money due to our reduced income.

It's frustrating, tiring and upsetting but it is what it is and I can't change that

[Scooter24]

Welcome Hellvis- sounds like you have things planned out well, what are your plans for a medication for the MS.?

I am sitting here at the moment with one boarder collie wrapped around my feet and the other one laying behind my computer chair, I can't move with out them knowing and following me. I purchased my first 2 border collies in Wales back in the early 80's, one from a gentleman at a sheepdog trial and then another one from the owners of the bed and breakfast were we stayed on our first trip. They are the greatest dogs ever.

[Hellvis]

Hi Scooter - lovely to meet a fellow Collie lover! Ours is out of a pair of working sheepdogs (she's nuts).

The only meds I'm on are Provigil for fatigue, Clonazepam for REM sleep behaviour disorder and Venlafaxine for depression which came a good few years before the MS.

[Scooter24]

Any reason your not on any meds for the MS ? I know the system of National Health Care works differently there, my wife is from Cambridge, England.

All of the BCs we have owned have been out of working dogs, the 2 we have now wouldn't know what to do if they had to work, they are very relaxed and calm in the house unless someone shows them a tennis ball, but once they are outside they get crazy, there are cows in the field behind our house and they go crazy when they see them but come right back when I call them off. I used to do agility with them but had to quit as I can't run along with them anymore and they are getting on in thier years also. Thier names are Zeek and Meggie.

[hunterd]

WELCOME HELLVIS!!!!!! GREAT TO HAVE YOU! you plans sound quite thurough and the walking is great!!!!! keep up the work and i look forward to seeing you around! good luck

[Hellvis]

Any reason your not on any meds for the MS ?

I have no idea no-one's ever mentioned it to be honest. I go to physio every other week and have an MS nurse who is about as helpful as a chocolate teapot. I've not really had any attacks for a while other than my usual bits & bobs, so maybe that's why.

Hunterd- Hi! thank's for the welcome

[Scooter24]

Guess my question is what are they doing for you to slow down or stop progression of it, such as any of the drugs like copaxone,avonex, tysabri etc. Seems to me you should be asking them what you can do rather than just let it go.

[owlnona]

Hi! Welcome, I love Border Collies,have a dear friend who has them. We have a Carin Terrier,who is a sweet terror LOL.
I have this MonSter for 11yrs. I'm on Rebif & have been from the start,it works well for me. Do you see a neurologist or a PCP?
This is a good group here ask questions,vent, comment or just have fun!look forward to your posts.
God Bless Nona Judy

[Hellvis]

Oh guys, I am so new to this (under 6 mths) I know sweet f/a about meds and I don't want to go down the route of internet research else i'll scare myself silly!

Owlnona - what is a PCP?

Scooter - my neuro has dumped me

I'm trying not to let it go, I'm carrying on as 'normal' as much as I can - stairs are my worst so i'm making an effort to go down stairs and hills as much as I can with the muscle excercises the physio gave me (without holding on to the bannister)

I've never heard of any of the meds mentioned, are they UK or US? What do they do and do I need them? Good grief I'm blinkin' ignorant!

[Bob698]

Let's keep it simple. (Welcome, BTW)
Are you formally diagnosed by a Neurologist?
There are treatments (prescriptions) that could slow or even halt the progression. You need to sit down with a Neuro and discuss this stuff. If they felt you've had MS for a long time, its possible they have you classified with a later form of MS (where the meds would be a statistical long shot) but many Neuros are avoiding the labelling and writting the script to see if it works.
You made an excellent point about trying to find information online. You still should learn what MS is, at your own pace. I don't want to scare you or downplay your diagnosis but for many of us it helps to know what we're fighting.

[Hellvis]

Soap box (sorry)

Let's keep it simple. (Welcome, BTW)
Are you formally diagnosed by a Neurologist?
There are treatments (prescriptions) that could slow or even halt the progression. You need to sit down with a Neuro and discuss this stuff. If they felt you've had MS for a long time, its possible they have you classified with a later form of MS (where the meds would be a statistical long shot) but many Neuros are avoiding the labelling and writting the script to see if it works.
You made an excellent point about trying to find information online. You still should learn what MS is, at your own pace. I don't want to scare you or downplay your diagnosis but for many of us it helps to know what we're fighting.

Hiya Bob, Yes I have been formally dx (see I'm getting the lingo) 26th sept 2011 if memory serves. They think I've had it for about 8 yrs - that's when both my legs went numb - I put it down to trapped nerves and didn't see a dr. Personally, I don't think it's 'bad' although this could well be denial When I have another attack, that'll probably be the point where I start yelling about what they're going to do to 'fix' it, but at the mo I feel fairly normal if that makes sense - 8 years of oddness feels normal now. Maybe I find it hard to differentiate after so long. I'm used to the stupidly shaky knees, the tiredness, slurring, looking like I'm drunk when I'm not, memory loss (although this could be due to heavy pot smoking as a teenager!) falling over my own feet, occasional double vision/vertigo and so on. I feel a hell of a lot better since quitting my 54hr a week job (I had a just dx meltdown and walked out). I now have a fab p/t job which I love. All my colleagues know (I'm not one for secrets of an important nature).

One question: How do I know what sort of MS I actually HAVE? I just got a letter saying 'conclusive for a diagnosis of MS which we previously discussed x months ago before we stuck a whacking great needle in your spine and laid you off work for a month as a result'.

I know I should find out, but I don't if THEY know. is it xxMS or xyzMS? It's been 8 yrs so I guess it's slowish. One thing I'm terrified of doing is informing the DVLA and my car insurance. I cannot lose my licence - I don't fall asleep at the wheel (any more ) and I know I'll end up having to get an auto in the next few years as my clutch leg is super shaky, but a blue badge would come in very handy as I can only really carry bags on my shoulders, not in my hands (twitchy dropsies).

I'm so very sorry for being soap-boxy. I know people with other illnesses far worse than I, but I'm still half a bread-winner and a stubborn SOB to boot and TBH I don't wan't to waste the neuro's time by going 'so what can you do for ME' (no disrespect meant to anyone by this - everyone is different) when I'm getting by okay as I am, in my head any way.

Good lord I'm going on, I'm so sorry but my one friend I would really talk to properly about all this - her hubby is a Viet and Afgan vet with PTSD and an 'unspecified neuro disorder'. He can't even walk ATM and she's a teeny tiny lady caring for a big northern RAF vet full time, so my 'problems' pale in significance and I feel guilty having a whinge whilst I'm helping her build a shed or do DIY while her poor wonderful hubby can't get out of his 'special chair' as she puts it.

Sometimes I feel like the lucky one

[Bob698]

I'm so very sorry for being soap-boxy.

You aren't. You made a good point about figuring this beast out online and I'm trying not to influence you in any direction.

One question: How do I know what sort of MS I actually HAVE? I just got a letter saying 'conclusive for a diagnosis of MS which we previously discussed x months ago before we stuck a whacking great needle in your spine and laid you off work for a month as a result'.

That's up to a Neurologist to figure out. You might need to apply some swift kicks now and then to keep them motivated.

[Scooter24]

Hellvis- I hope I haven't gotten you all in a twist with my questions, but I would suggest you discuss treatment first with you "MS" nurse, then try to find another nuero for your treatment. Why did your old one "fire " you? I don't think they will take your license as there is another girl on here from Ireland and she didn't even have to retake her driving test when she got hand controls for her car.

The pupose of most of the drugs is to slow down or stop progression of MS, you sound as though you have similar sx as I do. I personally take Tysabri ( a monthly infusion) and Ampyra which is supposed to help with your walking speed, it is a pill taken twicw a day. There a few different ones out there and not all are available in all countries, that is whyI suggested you discuss it with your nurse first and go from there.

Right now you just need to take it slow as Bob said, head down to the pub and have a pint and one for me please, relax and wait for your next meeting with your nurse, it isn't like anything major is going to happen to you if you don't start a drug in the next few weeks. I will say get as much exercise as you can, I know it helps me both mentally and physically.

Cheers

[Hellvis]

Thanks guys I'll get my proactive head on

[LisaL77]

Hi! Welcome! I'm sitting here in cold Rochester NY with my two bichon frise dogs curled by my legs. Isn't it funny how we get hooked on a breed?

I admire your resoursefulness in gardening to supplement your food stock! Good for you. Staying active besides.