hey! my flailing episode only lasted for 1 day.
hurray.
I’m back to non-windmill-in-a-storm actions for my arms and legs…
not sure about my brain though…
but I think that was always like that… 
[update]
the numb feeling in my upper legs has dimished by 50% !
is it possible that symptoms can go away?
oh the joy if they could… if I’m disabled like this only temporarily then that would make a massive difference to my entire outlook.
I am willing to accept occasional visits from disability if I know they are going to go away again (rather like in-laws at Christmas)
ha ha ha ha @ the analogy
Yes symptoms can go away when a lesion (if it’s caused by a lesion) heals. Dx
[update] 8 December 2012
well, it came eventually, my appointment with the neurologist after my MRI and LP.
bad news…
I’m not an x-man 
or spiderman
but…it’s not a terminal illness like "head-drop-off-at-random-itis" 
however, it is M.S. though
I feel I should get a badge or something.
after all this time of “it could be this” and “it could be that” it’s a bit of a relief to finally know.
but that sucks too.
kind of like winning a raffle and finding out the prize is a dog poop.
the neurologist says I have to go to the hospital for some IV steroids for a few days to see if that helps the symptoms I’m having at the moment (which is weird sensations - like numbness but not - in my legs, P&N in my hand, and a phantom egg under my foot…sprinkled with a basic balance issues when I’m standing)
He says he is diagnosing me with MS , no two ways about it, he could see it on the MRI and confirmed it with the LP results.
RRMS - that is the first thing it could be, I forgot what the other thing it could be was, it had a P in it and sounded much less desirable and had an ugly graph associated with it that kept going down and down.
(no green fluids spurting out my orrifices though, so not too bad if you compare them to being attacked by 2 headed dogs from Mars)
I’ll get a letter about my steroids thing and he told me I’d be put in touch with an MS nurse.
I want to thank everyone for their responses to my posts, especially Taz and Rizzo
having information from someone else was a major part of my missus not completely freaking out.
I think I might start a video diary about my journey… might help someone else in my position…
until I get some more news, I’m going to pretend I’m ok, keep calm and carry on…
Wow - well there you go! How did the neuro break the news to you? He seems to think you’ll have remissions (rrms) rather than progression (ppms) which is good if anything’s good. How do you feel about it? How’s your wife taking it?
You have such a positive outlook and sense of fun that’ll help you to face whatever you have to face. As Karen always says ‘ms isn’t the end of the world, you can still have a very good life.’
Debx
[quote=“debc”]
Wow - well there you go! How did the neuro break the news to you? He seems to think you’ll have remissions (rrms) rather than progression (ppms) which is good if anything’s good. How do you feel about it? How’s your wife taking it? [/quote]
the whole thing only took 5 minutes really, I don’t think he could really say much other than ,“yes you have” or “no you haven’t” and I’ll get more info after seeing what the steroids do.
thinking I should do some pushups and get all muscular… hehe, lol, I don’t think they’re those kind of steriods though
I’m not sure how I feel about it to be honest, I kinda knew it was this but being told that it is seems like it would be different but so far, it’s not.
my missus is more worried how I’ll mentally handle it and I’m only worried about how she will be so if I can play the part and keep a stiff upper lip, sense of humour and chipper attitude then I’m sure it’ll go just fine and dandy.
especially if I can get a blue disabled parking badge… hehehe
tune in next time for more MS Street drama!
Am slightly nervous about the type of video you’re gonna make given your predilection for super hero’s and projectile green vomit. Seriously though, it is exactly like winning the #%^* but you sound like you’ve got exactly the right attitude to put it firmly in it’s place. Catherine
Sorry it wasn’t superpowers - damn those neuros, they’re no fun!
Please don’t do the stiff upper lip all the time - talk to your wife and let her talk to you: sharing it gets it out of the system much quicker!
I hope the steroids work really well for you, and that hospital isn’t too boring!
Karen x
I was sure you were going to be the first ‘real’ x-man - how disappointing! Seriously though, sorry about the dx. I know it’s a shock, even if you think it’s coming! As Karen says - you don’t have to be brave, talking about it helps! Why don’t you get your wife to go on the ‘caring for someone with MS’ part of the forum. It might help her to help you! Remember we are always here to listen and try out your jokes on or failing that have our ears bent about the MonSter. Hope you’re OK - don’t keep it bottled up! Teresa xx
thanks Karen, you’ve been a great help!
I’m not sure I am keeping a stiff upper lip, it just seems like that to everyone because I’m not really freaking out. perhaps I’m still in shock or denial or some other psycholigical barrier is in place (perhaps from when I was kidnapped by aliens?)
so far, you lot on here have been my “someone to talk to” , I’m hoping we can keep that up? my missus does not have English as a first language and has enough on her plate, her brother just got dx with parkinsons. what are the odds on that? parkinsons and MS diagnosed within 2 months of each other in the same household … might buy a lottery ticket!
I’m not sure how long I have to be in hospital though, do you know how long each session of schwarzenegger steroids lasts?
and Teresa thanks for your comments! I was also disappointed with the x-man thing, the neurologist smiled at that when I asked about it…
I still think theres a chance though, just you wait, I’ll defeat an evil nemesis, you’ll see…
**MonSter …**haha, love it!
Hey trip Wanted to say hi. I too going through all the tests for MS. Tbh from what I’ve read on here if dx is MS then it’s not game over. (thanks to rizzos always excellent advice). Ive had 3 different labels in 4 years for whatever is wrong with me. So I just think if it does turn out to be MS then it’s just anther label. It doesn’t change how I feel. I’m still going to be having the same symptoms just with another name compared to the fibromyalgia tag they stuck on me 2 years ago lol. I know however that things could get worse if it is MS but hey I don’t know it is that yet. And I think anyone with a long term illness has to deal with each day as it comes. Your a very up beat guy - good or you! I noticed its past the 8th dec and we’ve not heard an update. I’ve really enjoyed reading this thread and hope your ok. Much love Jojo xxxxx
Hey JoJo I agree, it’s just a label to carry. If you can collect more than 5 labels, you win a badge! I hope I’ve got the ‘light’ version and I don’t have to go through too many attacks, it’s still very early though. And I did get a diagnosis, perhaps you’re replying on the first page of this thread and missed the whole of page 2?
Hi trip My IV steroids took about half an hour each of three times. They put a cannula in the first time, sent me home with it and just took it out at the end. I get what you mean about freaking…I haven’t either…I just keep thinking of all those worse of who have been diagnosed with something terminal. Some days it seems like everyone else takes it more seriously than me!!! Maybe that’s denial…or reality…I dunno. I too, see it as something to be beaten into submission, something I will live with…it will NOT live with me. And with regards our partners, coping and lottery tickets. In the last two years, hubby’s step father died then three months later his mum killed herself slowly and painfully by starving herself to death. The week I was diagnosed he found out that his daughter tested positive as having inherited his BRCA2 mutated cancer gene and two months later ( so two weeks ago) had a double mastectomy and the day after that he found out that his brother in law of 40 years has prostate cancer. I don’t know how he’s still standing…except that he’s the same kind of battler as me with a healthy dose of dark humour!!
[quote=“MrsH”] Hi trip My IV steroids took about half an hour each of three times. They put a cannula in the first time, sent me home with it and just took it out at the end. [/quote] Hey thanks for letting me know and giving me something to google (cannula) [quote=“MrsH”] And with regards our partners, coping and lottery tickets. In the last two years, hubby’s step father died then three months later his mum killed herself slowly and painfully by starving herself to death. The week I was diagnosed he found out that his daughter tested positive as having inherited his BRCA2 mutated cancer gene and two months later ( so two weeks ago) had a double mastectomy and the day after that he found out that his brother in law of 40 years has prostate cancer. I don’t know how he’s still standing…except that he’s the same kind of battler as me with a healthy dose of dark humour!! [/quote] Aye carumba! Now see, that’s why I’m not freaking out, there are people with MUCH larger problems to deal with. I can’t imagine how he’s feeling! [quote=“MrsH”] I get what you mean about freaking…I haven’t either…I just keep thinking of all those worse of who have been diagnosed with something terminal. Some days it seems like everyone else takes it more seriously than me!!! Maybe that’s denial…or reality…I dunno. I too, see it as something to be beaten into submission, something I will live with…it will NOT live with me. [/quote] Whatever it is, denial, reality, utter stubbornness or something else, it only matters that we won’t be bullied by our condition. Good for you, if I was on Oprah I’d say,“you go girl!”.
Sorry…cannula…need attached to adjustable flow nozzle. Needle sits in back of hand, nozzle sits on back of hand. All secured down with tape. Nozzle allows IV drip or drugs to be administered as and when needed. Doesn’t hurt being put in, staying in or beng removed. A good tip. Take a flask of strong coffee or pure range juice and mints. The steroids give you a vile metallic taste in the back of your mouth and coffee or specifically orange juice gels take it away. Sip it slowly whilst being infused!!
[quote=“tripmeup”] Hey JoJo I agree, it’s just a label to carry. If you can collect more than 5 labels, you win a badge! I hope I’ve got the ‘light’ version and I don’t have to go through too many attacks, it’s still very early though. And I did get a diagnosis, perhaps you’re replying on the first page of this thread and missed the whole of page 2? [/quote] Lol sorry yes was looking on page 1. Your a popular guy having 2 whole pages of replies! Sorry about your dx but you seem like a trooper so keep ya chin up and al on here will be glad to offer kind words when needed. Stay well, jojoxxx
hi dont know if i am on the right page for this or reading to much about symptoms i am getting,four months ago i had a cold when the cold was at its worse i was at work and lost my sight in my right eye for about an hr , then about 2 months later i started to get pins and needles in my legs and it was driving me mad , went to see my gp and was sent to see a neurologist was told i have to have a mri scan( which is this wk) since going to see him i have had pins and needles in hands and they feel like they are numb,i have spasms where my legs feel like lead weight and i have spasms at the bottom of my back also my joints ache at night when i am in bed . any suggestions
thanks for reading x
Ajl43 you might want to start a new thread so you can get people’s opinions. Bear in mind that they’ll only be opinions until you get the results of your MRI from the doctor. Good luck!
[quote=“MrsH”] Sorry…cannula…need attached to adjustable flow nozzle. Needle sits in back of hand, nozzle sits on back of hand. All secured down with tape. Nozzle allows IV drip or drugs to be administered as and when needed. Doesn’t hurt being put in, staying in or beng removed. A good tip. Take a flask of strong coffee or pure range juice and mints. The steroids give you a vile metallic taste in the back of your mouth and coffee or specifically orange juice gels take it away. Sip it slowly whilst being infused!! [/quote] Hey thanks MrsH ! I’ll be sure to remember the coffee. Can I ask you if you had any side effects? Would I be able to drive back home afterwards? Also, I’m sure the neuro told me when he saw me but that whole episode is a bit of a blur… What happens if they work to reduce my symptoms? Does that mean I always have to have them and what side effects do they have? …or what if they don’t do anything to my symptoms, what happens then? [update on me… Dear diary kinda thing] I’m having a little trouble with getting my internal engine running enough to do some work but I think that may be a combination of the cold weather and my home office having a window that can’t be closed. Brrr Possibly some defeatism too since the dx if im honest but I’m really trying to not let that get in the way. Good news though, I bought a house and that has all the windows present! Hopefully I can be in that before Christmas. Hope everyone is enjoying the holidays! I love Christmas so I’ll be conveniently ignoring mr. MonSter while it’s happening… (hope he doesn’t take it personally!) Andy
Hi Andy Sorry…but yes the side effects were awful…metallic taste that lasted for hours, not just while I was infusing, which is what they told me, a raging blinding fury which lasted about a week, acne, verbal diarrhoea and total insomnia for about a week too. I got 10 minutes sleep 3 times for three of those nights. I’m not driving at the moment due to other symptoms but if it wasn’t for them, then yes I would’ve been ok to drive. And, sorry again, but no they did absolutely nothing at all to alleviate my symptoms or speed up the recovery. In fact I had them 11 weeks ago and nothing has changed much and I am still off work, waiting for my body to kick this into touch!! Like everything with MS, if they don’t work, it’s just a waiting game with much patience needed!! But until you try them, you won’t know if they work for you and some people seem to have amazingly positive results. Good luck Catherine