Oh Happy Daze folks ~! HUGS to you all !!!!

Brain, is the "bloating" from the steroids? I heard you get puffy and blow up on some steroids. Coffee is a diurectic too. BUt be careful as you lose too much water/fluids you can throw off your electrolytes bad ok?

I saw my newest Rheumy who basically said the labs show I dont have an autoimmune disease as i have only one antibody that could be but i don't have the matching symptoms.

Ok..one doctor down (incuding two meds) but the last Rheumy treated me in the "differential" category as she thought I just had too many symptoms for me NOT to have some kind of "condition" HE disagreed...BUT..

He did say those "episodes " I get where my BP/HR suddenly go up and I end up in an "altered consciusness" state is autonomic dysfunction that can happen by itself OR with MS. He said he's NOT diagnosing it, but he'll write his concerns to the newest NEuro I am seeing for Narcoplepsy.

So next week I go for my 2nd sleep study to regulate the CPAP machine.
This is sooo expensive even for MY copay. ANd then I'll have yet another in the future to see how I respond during the daytime. arrgghh..

So now that I am not on the meds the first Rheumy gave me, I feel worse. I am toughing it out, its muscle pain and stiffness.. NOT joint pain.

I will live on!!!! Had a nice dream with my deceased hubby in it. We were so close and in love , walking arm in arm, looking lovingly at one another. Then his whole family was around his bed as he asked for ME and told them he loved me. (they hate me) THen.. later in the dream, I went to get my car, for us to get Mexican food, and when I returned I lost him, then woke up. Weird eh? Again I am working out my angst about how he died and how our marriage suffered.

Talk soon... sending your loving thoughts~!!

Jan

Afternoon AllSorry I'm late trying to shake off this nasty sinus cold
Don't know too much about all that bloating stuff Brain,but i hope you feel better. 2 weeks and counting till my next neuro appoint.
Maybe this will be the year for answers.

I'll bring the guinness next week Cheers

Jan - Hunny, I'm so blown up you can tattoo *Goodyear* on my side and fly me over a ball game.



Since you're off your meds - and I know your a naturalist at heart - you might think about this. (just a suggestion). Cinnamon and or chamomille are good muscle relaxants, and cinny also acts as an anti inflamatory. The only counter indicator on the chamomille is a caution if you have pollen allergies.

you can look those up pretty easily or ask your nutritionalist for more info.


McGimpy - I wrote that down. We're holding you to it, too. I LOVE Guiness.



Debbie - I only had a neck massage at PT. I know what you mean, I didn't want anybody touching me either, lol.

You always see the commercials where they are laying there butt nekked and I'm thinking - I'd be too uncomfortable being in my birthday suit to enjoy the massage.



Maybe I'm a prude? I dunno. Now if Johnny Depp was the massuese... that's another story.



Let us know what the eye guy says, okay?


GJ - *Dangling a jelly filled donut*

You mean like that?



You mean it's not US ya came to see?



You only love us for our pastries....

Tante - I wonder if that show Medical Mysteries will contact you someday. I've been saying this for 5 yrs... tx's are great, and cures are even better. But none of that will do us any good until they can dx us.

What we need is a A+ clinic that keeps us till they figure us out.

We need a cure for limbo.

Sox - I hope that upping the neurontin helps. But I do agree with Debbie. If you have to swith to lyrica, you should taper off the neurontin. Whatever the dose you're on, slowly lower it. You should feel okay med wise at each level before you go down in dose again.

I don't know about these two meds so ask your doc, but you may be able to start taking lyrica before you are completely off the neurontin - maybe not. But ask.

I took lyrica and neurontin - not at the same time. They are completely different drugs. I did not get any sx relief from N, but did from L. I had total cog fog with N, not with L. Just felt intoxicated with L.

I took it for a few months before it stopped working. Tried going up a dose, but had some swelling in my ankles. Tried it again recently but still felt kind of stoned and no pain relief.

I'd rather have the pain and feel clear enough to drive, you know?

*on hands and knees begging for that jelly filled*

Since we are all talking about PT: I took this week off to work on my exercises since I fell last week on ice and been hurting again I start up again next week.

I'm wondering tho...how does your PT work with you? Mine is very young and cute, and the work he is doing with me has made some improvement, working on my stomach muscles to support my back; However, I get there, he has me do a few of what I've learned, checks my stomach to see if I am getting stronger, then he gives me two or three more to take home.

I guess what I'm trying to say, is I thought they would work you on all the exercises then send you home. Not just give you the exercises, send you home to work alone on it.

Did that make sense? What about you? I guess I'm kinda stunned that its ALL ME I don't wannnnnnnnaaaaaaa!! heheheheee......taking a pill is so much easier! But I hate pills. Gee, I'm never happy! Slap me!!!!

OUCH about that fall, sowwy. Were you being chased by reindeer?

Mine checked me, but had me do them regularly at home and much of the clinic time was spent with things that I couldn't do on my own...stretches, manipulations, equipment, ultrasound, etc. Didn't you say the therapist is cute, kinda like a cabana boy? Is that worth nothing?

Greenjeans...thanks for you sweet sentiments. It helps.


But lately, I do feel sorta left out or lost. I dont have ANY real DX and feel farther and farther away from a MS DX that I am not sure why Id be in LIMBO any longer. Just love you guys so much~!

If I do have Narcolepsy I dont want to leave this forum ya know?
I would even miss my MS neuro. Isnt that too weird??

In my heart I know there is something wrong and more than one thing too.

Its not that I WANT a DX but so much goes on and yet an answer would be of comfort ya know. A name to the enemy so you know who you're fighting eh?

Anyone else feel like this? I know this will pass...it has before.

AGAIN I CHOOSE WELLNESS... whatever that will look and FEEL like LOL

Jan

I'll tell you what I told Gazelle :

You need to clear your mind, take a nice calm week or month, whatever you need. Relax. Let the answer float to the top of your head like a Magic 8 Ball. It's in there, you know it. You just think too much, you know too much.

And as nice as validation from any doc would be, validating yourself would give you real peace.

I think sometimes the waffling within ourselves (is it ms? is it something else? Worse?) is the stress that exacerbates the illness, puts our lives on hold, makes us feel the bars of the limbo cage more than the physicality of it.

More than anything that happens to our bodies, it's what happens to our minds in all of this that hobbles us.

I know it messed with my head. I will not allow that anymore.

I know what I know about my health, my diseases and disorders. And the answers came to me when I let it go, and let the truth float to the top.

After everything I've been through, I wonder if I'd believe anything a dr told me anyhow... so it was important for me to know what I thought, with or without a dx.

I still want them to dx me. I still want them to tx me. But even if neither happens, I know I will be okay. Maybe not my body, but my mind will be.

YES HE IS!!! LOL!!!
Good to know that he is treating me 'right'
I go back on Tuesday...I NEED him LOL!!!

hey all..a bit late...like what 3 days....

Anyhow, Jan we love you that is why you are here hehehe hugssss

hugss to all ...

I am doing ok, working, kids, getting ready for my trip for work, going away
9th-14th for work...for school...gonna miss the family...but will also enjoy some time...quiet quiet...

Today was a tough day at work, I was missing two workers..and no one could fill in...uggggg and busy busy morning...it was sunny and warmer than usually so many were out and about.....and coming to McDs...ahhhhh

My baby has a fever, and I feel awful, kindof a cough but more a throat thing....

anyhow...nothing new medically to report..as I dont see drs...I just keep going right now...and learning to accept...how I feel ...as it is pretty norm for me..to tingling pain...or the other stuff....just keep going....

hugssss,sarah

Oh Jan! That was a nice dream....sometimes you just never want to wake up! Me and my DH also do Mexican every friday night. It's our date night. Moments to cherish to be sure. So sorry for the loss of your best friend. Don't know if I'll ever come to terms with the fact that we all have the same ending. I hope it's a good day for you!