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.