@ Rest Area 51 Paging ALL MS Newbies Sept 05 '11

[gomer]

Welcome to Rest Area 51... a special haven or your New MS family for newbies Dx'd w/MS in recent days or years and newbies at .

Pull into a nice cozy shady parking spot Pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air . Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends that understand. We have a virtual soap box, feel free to vent anytime.

Being a newbie can be as scary and lonely as being in limbo, Remember we are you family away from family. The BIG question answered means many more new questions and decisions.

If you have not taken a advantage of our Rest Area 51 lately, PLEASE grace us with your presence, take a break from the MSuper hwy and let us know how YOU, a member of our MS newbies family is doing. For those who stop in and say hello each week, thanks.

Hope everyone had a good summer!

Have a QUESTION? Please don't be shy........
The only dumb stupid question........is the one NOT asked.

Vit-D.......... Has been a hot topic here lately. I was taking 2,000iu 2x/Day but found it cheaper to buy bottles of 5,0000iu pills, still quite small. The cost was $6 at Walmart for 100 pills. The 2,000iu bottle of 200 pills were $9. Bottom line is I saved $3 or 33% and can skip one day a week and still get just a little more vit-D, so for me its a WIN WIN issue. Funny thing was that the double bottle DEAL was actually the most expensive option???? (marketing).

EEG = Bad Hair Day. I had my first one way back in '59, never told the result but I suspect they suspected MS back then, based on comments about need to consider future medical care. In retrospect (20/20 hindsight) I had MS Sx even back then. Never understood WHY I could not do things like keep up with other kids, play sports much or dance. I just always adapted to what I COULD do instead. Traded a baseball mitt for flying and a camera.
Well it's FALL and turned COOL already. Trying to get ready for ole man winter and still recovering from my road trip..

I had my labs drawn last week to see if I even get a shot at the ampera.

?How was your Week? ........
...Good I hope, Any Dr. apts tests etc?

? What does the new week have in store for you?
....Any Dr. appts. tests etc.




Gomer Enjoy fall...but don't FALL

[tambrown]

I'm still waiting for MRI on the12th to get official dx .My neuro said since my last office visit in may I've developed several new problems and in her opinion I'm having my second clinical flare up . So actually I'm waiting for MRI results , she did give me information on beta an copaxone to start thinking of which med I would like to try .

I was told yrs ago by my pcp Yes it's MS an no you won't get dx until you meet mcdonald criteria . Which I will finally meet hopefully . Even so it's still upsetting to have to face it's really true .

My last flare was 5 or 6 yrs. ago I was beginning to think it may have been a CIS type thing . But all these new things are going on with this flare foot an leg things . I will be very surprised if there are no new lesions or enhanced lesions .

If there is no change on my MRI will I still be dxed ? It's hard to wait . I guess I've waited this long whats a few more weeks right .

Thanks for listening , Tammy

[journeyman]

Good to see you back Gomer.

We missed you. I was worried if you beat the storms back up to the frozen North.

I had labs taken about two months ago and the only thing that was out of control was triglycerides. Doc said "Way out of control." I've been a tiny bit out of control but not this much. Must have been the pizzas and Cuban sandwiches.
He put me on Lipitor and so I'll get repeat labs tomorrow.

I got my teeny-tiny gardens in this week. We have two planting seasons here in FL. May and September. I planted yellow crookneck squash, string beans, flowers, chives, basil, parsley and cucumbers. They are in pots around out pool. Can't do the big gardens yet.

I started painting again. I am doing a large painting for my Son's new office. He just got promoted. I dabble a little on the potted gardens and the painting each day before the heat hits the 90's and the humidity hits the 90's. Today we are getting one of the outflow bands from Irene. For us this far away its 30mph winds and drizzle.

I am jealous of you up there were the fall is approaching. Our fall arrives the second or third week of October - no leaf color change. But I do love gardening. We are hoping to move in a couple of years when my wife retires and get a house where we can have a garden in the yard (as in possibly Georgia) but for now I'll settle for our pool.
Dave
J: Tampa, FL

[JudySz]

I am so excited for fall. THe cooler weather alone is enough to make me happy.

Going to a therapist today. Tired of being depressed so we wil see how that goes.

Really busy Labor day weekend. Did not realize ow busy till I slept literally all day yesterday.

Get to babysit again this Friday, so looking forward to that.

Otherwise same old dull week. Playing on computer and cleaning

JudySz

[oso49]

Finally...a dx...

'Twas a fantastic Labor Day weekend. Knowing I had a follow-up appointment today (LP results are in), I (we) spent the weekend in the Tampa area (Brandon) partying with kids and grand kids. Went to the beach in Sarasota, ate great food (the Columbia) drank great wine, watched sunsets (kind of - it was a bit overcast. All in all, a wonderful time.

Just got back from my neuro appointment and I'm officially a "statistic"; dx is RRMS.

Ohhhhhh, JOY!!!!

Will be working a second opinion very soon.

Bye all!

May God bless...

[momof8]

BigA

Bringing this over from last week's thread so as to keep the convo going on the new one.

Tysabri? Have you had many relapses? Were you on a DMD before? do you have much progression? Sorry if you told me and I forgot. But it seems a big step to go to Tysabri

So here's where I'm sort of confuzzled.....because, no. I haven't had much progression and don't feel like I even have much damage (based on MRI results), but maybe that is relative. I've had 3 relapses in the last 5(ish) years, with this last one being way worse than the first 2. No real way to gauge progression, though as this most recent MRI was the first time I've had the spine done.

I guess it's a mixed bag, I like that my neuro didn't just say "take this.", as I likely would have balked and wanted to research it anyway. But on the other hand, he basically just wrote down the different meds & how they were administered and told me "go home, do some research and figure out what you want to take.".

So then I find some mentions here & there of Tysabri being a more "agressive" therapy. And now I don't know what to think.

It is quite difficult to research these things at all as I feel like there is just so much info. And of course, it is all biased toward whomever is putting it out there - by the drug companies or by someone's personal feelings about how they responded positively or negatively to it.

To be honest, I lean toward not medicating at all. But I don't believe I am discipline enough to do a diet/exercise/supplement approach. And my doc leans toward medicating, but he's a medical doctor. Which means I would assume he would be biased toward a medicine-based course of treatment.

GAH!!! That is pretty much my feeling right now.

[momof8]

Also, is it possible to private message (PM) on these forums? I've looked but don't see how.

[BigA]

Why you should be taking 10k/day vitaminD

Here's a paper on why people with MS need high levels of VitaminD and why it's safe. You can take this paper to your doctor.

http://www.overcomingmultiplescleros...+of+Wisconsin/

[gomer]

Hi crew..........

Still tired and also recovering from being pulled sort of head first out of my lazy-boy. Long story... A couple years ago I bought a long foam tube, toy item, and cut it in half for sword fights with my grandson. We have had lots of fun over the couple years.

Well... my son was over, with grandson the other day. The PLAY varied between son, grandson, gamma and me. At one point it became between me and my youngest son, grandson's daddy. Well I beat him TWICE, fair and square, knocking the play sword out of his grasp TWICE.

Then it escalated a bit, he grabbed my sword and proceeded to pull me out of the chair. Well I am a stubborn ole fuddy duddy, I do NOT give in/up or let go easily and soon I was on the floor, head first, lazy boy tipped and all. So my PRICE for trying to be unbeatable I ended up with both hands bleeding from cuts, a chipped tooth (sharp edge) and jaw slowly getting back to near normal. Moral of the story, be careful about pushing beyond your limits, or else pay le piper.....
(next time, if there is one, be in my power chair with SEAT BELT FASTENED!)

Momof8....... Most of the CRABs are interferon's, dose schedule etc varies. Copaxone is one exception. The drawback is its a DAILY shot instead of one or more a week. Another is that copaxone is a SC (under skin) shot like insulin, I have many decades of experience there....lol) I did not want the regular bouts of flu Sx for one thing, nor do IM shots, did that for a while for B-12.
For me, copaxone was just one more shot in my regular daily routine of multiple insulin shots.

oso49........ you are MORE than just a statistic, at least to us here anyway. I expect you are glad to at long last have a rational answer and be out of limbo.

Gotta run, gettin tired........

back lature gaturs.

Gomer

[BigA]

I wish we had our own section. I have to scroll past so many frightening posts on my way to 51.

Momof8
Giving yourself a shot seems the most terrible thing right now, but it's not really. You get used to that. What's harder to get used to is how you feel after taking an interferon. I would start with copaxone. It's the smallest needle of all of them and there's an auto injector if you like.

If you're thinking Avonex will be easier, it's got a l o n g needle which has to go into muscle and because you inject once per week, you never quite get as used to the effects of the shot. It does have advantages - no site reactions, a lower chance of neutralizing antibodies and you're taking much less of a strong medecine.

Just start with one, you can change if it doesn't work or causes too much suffering.

[gomer]

Hey Hey Big A........

I'll bump this up for U and all.

Look for my post about Ebay & nMSs posting here

Gomer

[BigA]

Thanks Gomer. I actually hesitate to read about a symptom I don't have. I used to be worse. I'd have to leave during the nurse talks where they listed all the symptoms.

I'll read your post.