I'm Special
I went to see the neuro yesterday with a heap of pieces of paper and questions.
On CCSVI there have been as many "normal" people with narrowing of veins as MSers so that's possibly not the answer. On iron levels, it's possibly not just an MS thing either. Never heard of LDN - I don't think it's helping and it was a rather expensive experiment but I guess a worthwhile learning curve for me. It helps that Mum and Dad paid for the second lot. No amount of diet or exercise or vitamin D is going to help my MS though it will help my general wellbeing of course. On my suggestion of an unhealthy feed washed down with a large amount of alcohol, it won't make things any worse.
Fkn-omigod is a possibility for PPMS but it probably won't be available for 6 months. Chlamydia (sp 
) is the other one that's looking hopeful.
In the meantime, me and another bloke are the worst cases he has, though the other bloke has to go to Brissie every month for a procedure for his neuralgia. He's had MS for 7 years though and I was diagnosed on 24 March 2007 so coming up for 3 years. Apparently I cope better than any of his other MS patients and still have my sense of humour (most days). From 0 to wheelchair in 3 years has been a pretty quick downhill slide though. And apparently I've deteriorated since he last saw me in November (no sh** Sherlock!). I originally thought I'd drive off a cliff if I was going to top myself but I don't drive any more so I've revised the plan - except I love my husband and kids too much so I've just got to harden up snd find something to laugh about. At least I never have to be sober driver now 
I read about all these people with relapsing remitting with envy. There won't be any remission for me just more crap until they find a treatment that works. I'm not holding my breath but it helps to live in hope. I'm sure I'm not the only one - who else out there is like me?
So I can say without any argument that I'm Special and I can use my brain damage for an excuse for anything 
That was a long one and hard work. I used to be a real good typer too:-(. Time for a snooze now. Have a gr8 day.
Cheers,
Shaz
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Comments
Keep that spirit going
Keep that spirit going Shaz.... its good that you can laugh and find some humor in it... given the bad hand you have been dealt, it may be the only thing that keeps us sane I think!! You are an inspiration!! By the way, which neuro do you see, if you dont mind me asking?
Cheers Kristy
Life is like a box of chocolates.... never know what your going to get
Neuro
Just did a huge reply and lost my connection
Lost my moment so this will be a quickie. Dr Mooney who works out of Nambour Hopital and also Caloundra public on a Tuesday. A really nice guy, works hard and is very serious. Half of the nurses at Nambour think he's hot. He gave me tissues and held my hand while I lost it and cried and snotted on my husband. I originally saw Dr Patrikios who works out of Nambour on a Monday. Also very nice and they all consult with each other - nothing but the best for us special people 
I WISH I WAS A GLOW WORM. A GLOW WORM'S NEVER GLUM. COS HOW CAN YOU BE GRUMPY WHEN THE SUN SHINES OUT YOUR BUM.
LOL, I hate it when you lose
LOL, I hate it when you lose your reply!!!! Frustrating hey!!
I see Dr Patrikios down at his rooms at kawana. I really like him, and he knows his stuff.
I just wondered as when I was DXed nearly 6 years ago we seemed to have a shortage of decent Neuro's here on the coast! I saw one, Dr Staples, at Nambour Hospital, and was very put off by his 'bed-side' manner, so when I needed to see one again, I went shopping!!
Patrikios used to be involved in the MS Brain bank... those places worry me... I've seen movies where they run out of specimens... mmmm, who do we have on our list
, lol..
Cheers Kristy
Life is like a box of chocolates.... never know what your going to get
keep those cluey words up
Hey Shaz,
I thought it was koala's that had issues with clamydia - geez don't really want to be dosed with that!
Helen.
An Update. What A Week!!!!
Went to the MS Socety seminar thingo in Maroochydore yesterday.
Tim O'Maley (MS nurse - I think he worked at the clinic with Bernie - could be wrong) spoke at length about new drugs on the horizon. Some of his points differed from what Dr Mooney said, but then his work is solely with MS and Dr Mooney works with a whole range of neurological stuff. He also said that Fingolimod and Cladribine would be the next big things. CCSVI is looking hopeful, as well as stem cells, the statins ... Sorry, there was lots and I have CRAFT disease.
Then there was our new Sunshine Coast RSC who seems like a nice bloke. Then Jill Tillson - mmmkay! Then a physio chick who really made me mad - well had me in tears actually - this week's hobby it seems. Her ramblings were based solely on a person with RRMS who had no disability. Her attitude was basically use it or lose it (fair enough to a degree)and if you'd been doing more exercise you wouldn't have got so bad, just go for a walk down the road or on the beach. Man, I wish!!! What does she think I've been doing the last 40 years! Then she was supposed to be recommending physios that knew about MS but she didn't know any - huh, who does she reckon organised the thing?
Anyway, Tim's talk was good and it was good to meet Tas.
Cheers,
Shaz
I WISH I WAS A GLOW WORM. A GLOW WORM'S NEVER GLUM. COS HOW CAN YOU BE GRUMPY WHEN THE SUN SHINES OUT YOUR BUM.
Your week
Glad you got to go to the MS Society seminar even if you only got a bit out of it.
Sounds promising about the new drugs.
Sorry the physio was such a waste of space (to put it mild), I hope you let the ms society know that the physio was worse than useless as they wont know if you dont. As for use it or lose it, good in theory but not when you just cant do things anymore. Dont take it to heart as she obviously does not know ms people very well.
Breathing in, breathing out, I return to my own blessed center.
I am ready to receive miracles!
MS Maroochydore
Hi Shaz,
You are right about Tim, he was the MS nurse at the MS Clinic at RBH who taught me to do injections, seems he's moved over to the society in an educator role. He does know his stuff.
Can understand your frustration with the physio - at least she could have mentioned some adaptations for chair based exercise and hydrotherapy. It's hard to be 'one size fits all' for MS.
Did Tim mention that Fingliomod may be OK for PPMS??
Helen.