Last reply 6 years ago
Hello! Newly Dx

I have been recently diagnosed with RRMS, although the Drs seem to be puzzeled by my condition….which means more tests and more tests and bouncing around neurologists as they seek 2 and 3 opinions. From what I gather so far, this disease is quite special 😉 hard to diagnose, manifests itself in very different ways in each case, no predicting its evolution….etc I always wanted to have a talent or even a party trick, was thinking along the lines of playing the guitar I ended up with numbness in odd and bizarre places!! Be careful what you wish for……
Looking forward to get to know you guys and hoping to keep this whole thing on the lighter side, life could be much worse, and guess what this is the one we have so we might as well play the cards we’re dealt and make the best of what we have
X
Haz

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chueykooh
6 years ago

Welcome zoom, yes there is no definitive test for MS so it can be hard to diagnose, it’s equally as important to rule out other diseases that mimic MS. It seems like you have a good attitude about it, that will go a long way with this disease.


zoom
6 years ago

Thanks Chueykooh,

My 1st MS friend! What’s with the name? Mean anything?


chueykooh
6 years ago

Haha, yes we had a discussion about this last night. look in the forum under muscle twitching and that will explain the name 🙂 second page in the forums


Anonymous
6 years ago

Hey Zoom! Welcome to shift! Your comment about wanting a talent and getting this totally made me crack up! I’ve made similar comments to my partner, friends, and family before. Its great that you have a dx but they are also making sure by ruling out other options. Better then not having a dx and just sitting around without know what might be going on.
Keep us updated on how things are going!
Your attitude towards this sounds amazing and as @chueykooh stated…that will take you a long way here and with this disease. A positive outlook is vital.


zoom
6 years ago

Thanks Chels,

As you say better to rule things out, so off I go to more blood tests must be my 5th in a months, Drs. Remind me sometimes of road contractors, like the cable company digs the road up to lay some fiber, creates havoc, and then paves the road, 2 weeks later the water co. changes the pipes in exactly the same spot same outcome then covers it up. Now guess what? the gas guys show up……. By the time they all had their pass the road is so uneven that the municipality decides the whole thing needs paving again just in time for the cable guys to be ready for their next wave of upgrades.!! For the life of me I never was able to understand why they cannot schedule the whole thing in a way to dig out the road once have them file one after the other and then cover it just the once. Now that would be too easy!! The reality is probably not enough money in it for the mayor’s cousin who owns the road paving company;-)

Same with my blood tests, Vit D, then B, then the anti bodies for Devic, then it might be Lyme disease infection so lets check for that, and today I think it’s called LMT searching for the virus that can exclude you from taking tysabri. I can understand why they won’t drain your blood in one go to get enough to do all the tests but you would think I wouldn’t have to do 5 in the space of 4 weeks, it cracks me up.

At least I like my neurologist, he’s the right combo of empathy, competence and a smidgen of the god complex that most Drs. Seem to have 😉

I’ve been browsing the forum and saw the thread about your new job interview, how did it go?

Haz


Anonymous
6 years ago

Hey
I know exactly what you mean! The road work analogy is WONDERFUL. So very true. I actually just had blood draw a few weeks ago as well. Took something like 6 of the massive vials (the ones that are like 3 of the little vials put together). It was very special.
Good luck on all yours tests! Hope they finally come to a conclusion about things.

I get the fun and wonderful experience of having a nerve conduction test done on the 25th (they are putting me on Valium for it because my daily pain is impressive as is) and then the 26th I’m having another similar test that I honestly couldn’t tell you the details of…and then they are sending me out for a reflexology test.

The interview went great. Got the job, told them I have multiple doctors appointments coming up which made them pause but didn’t go back on their offer of employment, and I just gave my two weeks at my current job. So things went well. Thank you for asking.


aardvark
6 years ago

Hi @zoom and welcome to shift! I have a feeling you’re going to fit right in round these parts 🙂 Mark


jonnydrama
6 years ago

Hi @zoom – I’m going to try and best your unique position in that I have both MS and epilepsy – and according to doctors the two may not be related! Had seizures and found MS!


gpeps
6 years ago

Welcome @zoom, great to have you here.

and great work @chels – that’s excellent news about your job! Well done


markms
6 years ago

hi zoom and welcome thats the way to go lol party trick mines falling with out the booze lol


zoom
6 years ago

Thanks guys,

Well done Chels on getting the job, I opted to keep my little friend under raps as far as the job is concerned. Can’t see the upside. Don’t care for pity, I have 10 years of a great career at the firm and can’t help thinking that they will start looking at me differently and perhaps undermine my career progress at exactly the time hen I actually need to front end load my ability to earn before I am forced to slow down. Still putting in 14hrs a day easy, I guess having 2 little girls (6and 8) and a stay at home wife – for now. she’s already looking for a job! Kind of focuses the mind a little bit. However I am kind of excited at my prospects for early retirement, indie movies, obscure music, walks in the park, or rolls/ rides I guess segways should be standard issue with a prescription 😉

For once having too many women in my life is a blessing! My credit card would never agree

Poker night with the boys tonight, hoping to top up that college fund

Keep well everyone


zoom
6 years ago

Jonnydrama,

You win man hands down, I just hope the cockroach theory doesn’t hold here…you don’t need that

Haz

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