Sandy,
five years? That long? What if your symptoms are worsening quickly? Do doctors keep notes and just watch you then too?

Oh yeah they will and it tells them how the disease is progressing or not progressing. Jim was considered RR and then Chronic Progressive during those years because he went up and down and his disability was not improving with relapses. We were told at the five year mark that Jim's condition would worsen over time based soley on his history. They said the relapses would not occur as often and the damage would be harder to come back from. They suspected SPMS at the five year. They were right.

Until...7 years ago I heard one doctor (Jim's neuro) say SPMS and then another (resident) say PPMS. That ticked me off because it seemed no one had a real clue what Jim's ms was. I stood in front of his neuro and asked which one is Jim and he said SPMS. I was pretty sure it was SPMS since most docs said that but when I heard PPMS I got frustrated. Just shows one that even docs have a hard time distinguishing this darn disease. :rolleyes:

Oh and we fired that neuro. :p

Hi everyone!
 

Erin - I can't agree with you more about staying off the internet but it is hard to when you're newly diagnosed. I was diagnosed last year and spent lots of weekends watching every youtube video, message board and website about MS. After worrying I was going to get every MS symptom known to man I eventually stopped worrying about it (mostly) and went back to just focusing on what I do have.

To be perfectly honest, I don't think that incontinence, although horrible-sounding is the worst symptom on the list.:( I'm more worried about having problems walking and so on. Right now, it's just numbness and tingling so I'm always waiting for the other shoe to drop. However, I hope there's some comfort in the fact that some of us have very minor symptoms (at least for now :winky:)

Kathy

You know what? I still research the MS and I've been diagnosed for about 3 years now. (diagnosed Jan 2007)

I try not to do all the research because it does still drive me insane, but the innernets are here and I have insomnia and get bored and so I start googling and one thing leads to another....pretty soon I'm obsessed and going nuts.

I'm trying really hard right now to not google numbness tonight. Because I'm having some more of that and it's really disturbing me and freaking me out. (left hand has been numb since september, and tonight I'm feeling my right hand going numb too...more numb right now than it was two hours ago)

Potty problems sound bad, but at least there are treatments and things you can do to deal with potty problems. Not a whole heck of a lot that they can do for numbness as far as I know. Even tho I know it probably wont work, I might call my neuro in the morning to ask for a bottle of prednisone.

What I wouldnt give for a big bottle of LDN to see if that helps at all...too bad none of my doctors are nice enough to let me try, and I still havent been able to find anyone in my area that will Rx LDN.

I too encourage you to keep reading, BUT and thats a big BUT I want you to remember that MS doesnt affect two people the same way. Even twins!

Some of us will have a mild course, and stuff will come, and stuff will go. Others will have a downhill slide. You wont know which one you are till you put some time, and milage behind you.

Either way...it WILL be ok! You will come here, and ask "what is this?!" and we will help calm you. btw, anxiety is also common in MS patients. The need to over examine your body, and the easily ramped up stress. Loads of us do that. We learn to temper it with good reasoned, rational investigation.

If you find cures that cure everything from Acne to Zip lock, please see that as a flashing light of warning! To cure cancer you MUST ramp UP the immune system. To help MS you need to CALM the immune system. You cant have it both ways.

You are going to hear from friends, family and co workers who know of a old neighbors cousin who has a sister, that works with a man who had MS and after 2 years...(insert your own story) it will either be tragic and they give you the "poor you" face, or it will be a dramatic healing and they will want you to try whatever therapy they took. You get used to the stories, and start to tell folks "My MD and I are looking into that! thanks!" and WALK AWAY! I am not saying dont try research things, just use your noggin.

The early road, early days of MS are extremely stressful. Hang in there, and take ONE step at a time. You are on step 2 and your mind has dragged you to step 103. Take a breath, and know that you are in good company here. Hang tight. :hug:

I got snockered last night....ha-ha ;P


I got calls from family last night saying good luck and all that crap for Thursday's fun...eh it's nice, but that stuff irks me...OMG I'm just going to see what sort of dope I gotta take lol I swear if I find a get well balloons and gift(candy assortments, cookies and such) there will be a shooting lol.

Ok bye for now and I really wish Thursday will get here. I'll let yas know.

Eric, try to relax about your appointment. I know....I know.....it's nearly impossible to do but worrying only causes more anxiety.

When I first went to a Neuro I was dealing with a case of severe double vision. Had no idea what was causing it. Like everyone I researched my symptoms on the Internet and had all but diagnosed myself with a brain tumor before I ever got to see the doc. When he dx me with MS I was so relieved! He laughed and said that my reaction to the dx was a first for him! I told him what I had concluded I had and he said "stop researching on the Internet!". My double vision cleared up within 6 months and I went on about my life....knowing that things could happen......trying not to stress about it.....and feeling very thankful that it wasn't what I thought it was.

It's been 4 1/2 years since my diagnosis. Yes, I've had to make some adjustments and I've had some exacerbations that have slowed me down considerably.....but I just take things one day at a time. That's all any of us can do....MS or not.

MS may have bummed a ride with me but I'm not going to let it choose my direction. I'll make adjustments and provisions for it but I'm not going to let it dictate my path.

They did find two episodes so it's pretty much in the bag I got it and I am hoping tomorrow I can find out whats gonna happen then just start doing what I gotta do. I'm just tired of the anticipation......why does it have to take so long?.....arrrrgggg

Thanks everyone....

We used to have lots of men in here. Where did you disappear"? Probably Facebook or some other dirty place :D. Frank, Moose, Larry, Harry, Gene, Tom.............I'm forgetting many????

TXBatman still posts quite a bit. Marcstck (wheelchair kamikaze) comes on every now and then. freeinhou (Tom) still posts fairly often. You're right, though, there used to be more.

I am also surprised by not seeing men posting.

As far as MS, I have no control of how the disease is going to affect me. I can only control my reaction to what is happening.

I have developed incontinence. I wear a "pee" pad. Not crazy about it but if I have a need, there are drugs to take if I am going on a long distance trip with no bathrooms. A road trip...but I prefer to fly and DH has flight/hotel points we use when we go away.

Dx'ed in 2005 with PPMS. I probably had sx's in my 40's.

I started using a walker over a year ago. Got over being self conscious about it. Makes people very nice, wanting to help. I let them help because I know that I felt good when I helped someone.

As for researching the internet, I let everyone here do that for me. (Yes, I am lazy about it!) There are a lot greater brains here than any work I may try to do on my own.

Just make sure you bring notes of what's been going on...and remember to write down what the doc says...I always bring DH with me, since I forget what he tells me. Last time my doc wrote down all that he wanted me to do so I wouldn't have to. Only thing is, I never took doctor writing hand translation classes in school:rolleyes:

just thing of one thing: what do you want to learn from your doc during your appt? This will guide the questions you ask...

Awesome Idea Debbie! I was so "deer in the headlights" during my meeting, that I forgot half my questions, even the simple ones, and walked away going "what did he say?!"

Take a simple list of your top ten questions. Include your incontinence question.

Take enough paper to write down his replies, and if he is getting ahead of you, ask for the pamphlets that come with the disease. His nurse should have a boat load of stuff you can take home.

Also ALL of the injectable drugs have their PR kits that have note books, book bags, and literature in them. Take a few home. Take them all home! enjoy the freebies!

Dont panic about which drug to chose. Have a frank discussion about it with the MD and get his assurance that if you feel this med is horrible, he will take you off it. Place you onto another choice. Many of us started on one drug, and landed on another. Some of do beautiful on Betaseron, and others of us didnt fair so well. You wont know where YOU land till YOU use it. We will be here to cheerlead you. :hug:

I still have the nice Copaxone bag that my neuro gave me. My netbook fits in it. The binder makes a nice place to store crochet patterns. (I threw out all the documentation over the summer after I quit the C)

I gave my mom the pen and the calendar back when I first got that bag. She likes pens, and really likes free calendars.

My dad used to get a lot of freebies from the drug reps at the hospital he works at. We've got a zillion ballpoint pens with the names of medications on them.

When I was in school, I could always identify my pens when someone stole them from me because I knew the drug name written on the pens and how to pronounce it.

I actually asked this yesterday and hope that some guys would tune in here and I would like to talk about how it is going with them.

Gahhhh I'm not big on preparation for these things. I don't do much when I am under anticipation and nervousness. I'm more about...put my shoes on, walk in with my hands in my pocket and just getting it over with. I have some basic things I'l remember to ask and yes.... the continence thing... If I can do something now that will resist "that" I will be sure to do it.
I'll bring a small notebook with me, but mostly my cousin will do the writing...I'll be all nervous and shaky to do that so she won't mind.

I guess my biggest worry(always has to be one) is really bad news.... I mean what if he says it's bad?... What if he says don't even think about remissions or recovery...... I do know they probably won't be able to tell right now, but you know what?....I don't want to know.

Thanks kindly to you all. You have made me a little less nervous and tomorrow I'll be getting this over with. It is what it is and I will do it like all of you do and I am glad you all are here to support. I hope as we become better friends that I get a chance to meet some of you in real life.

Love.
(Eric) :cool:

Thinking of this appt. as "getting it over with" won't get you the kind of info you need if this is indeed MS...this is the beginning of your journey with this doctor as your teammate...and you are a teammate also.

You are a consumer purchasing health care...to be informed is to be empowered. I am NEVER afraid or stressed when I see this neuro, because he spends all the time I need answering questions and checking me to see how I'm doing. I feel as if we, with my DH, are a great team in this journey.

I hope that you help your doctor by explaining your symptoms, your concerns, and asking the questions you need answers to. That is why it is so important to go in with them written down-some of us draw a blank, as Dej said, and if you can look at a paper with your questions listed, then you won't have to stress out about not getting them answered.

Good luck! Let us know how it goes...and no matter what, keep checking in here...it's been a Godsend on my journey...these people are the best!:)

And Bill/nakita has been here a lot recently..:hug:

Tom's posted some funny stuff on the "Shower" thread B2Y started. :D

Mike (Putterfit) is around a little after a long absence. No PJames though. I see some on Facebook.

Hey, I didn't even piddle when I fell..:cool:

When ever I fell, I got an overwhelming urge to piddle and was so proud I never did. So sad the things I'm proud of anymore.

Eric? what happened? I know you had a Thursday appointment for a check up, and medication talk. We are here when you are ready. :hug:

I've been waiting for an update, too! Don't leave us hanging......we're concerned for you! Let us know how things went when you have time. :)