[braingonebad]

It's Wednsday once again, my lovely limbo ladies and gents.

The Limob Lounge is fully stocked - coffee, Krispy Kremes, fresh fruits and what-all. So come on in and make yourself comfy.

I could use some tips from anyone else who retains water really bad - how do you get it out of your system? I'm so puffy my eyes look like I been crying all night. My right eye is really uncomfortable.

Those shots are doing a number on me. The steroids get me, and on top of that they mess with my period (haven't had one since about the 1st -2nd week of the year?). So I'm horribly bloated. Maybe just take a pamprin? - it has a diuretic.

And I go for another shot tomorrow, this one is called radio frequencing. More of the same only stronger I guess. He didn't really explain so as I could understand.

I told dh - okay, as long as I get a good rock station. I'd hate to get stuck with some sucky music.



I have to remember to bring my lumbar MRI report and I should just bring the films too so he can look for himself. He may want me to do a new one along with the hip. We'll see.

All this stuff has nothin to do with ms I know, but I gotta get to the bottom of it to figure out what is what plus this is bothering me more than the stuff that might be ms. I am doing a little better with that, but I still have a little fatigue, vertigo once in a while and this *bug crawling in circles on my head*.

There are a few tingly places on and off ion my limbs, but that could be anything.

The shots did help that really horrible pain/paralisys thing so far. I had one episode of that the day after the last shot. Knock on wood, I hope I'm past that for a while.

Of all my sx, that one is hands down my worst.

So.... how are all of you?

[soxmom]

Good morning Miz BGB. Im so glad the shots are working for you, its
about time you felt less pain. I think pamprin for the bloating is the way
to go. Lets us know how the new shots go.

Me here, Im hanging. Had a checkup for my pain mgt yesterday, hes
upping my neurontin to 800 mg 4 x day. If this doesnt work we are
going to try lyrica in six weeks. Im worried about switching as I
ran out of neurontin for about a week this past christmas and I got
really sick with withdrawals. So Im not looking foreward
to the switch. Im still a mystery to him. Im in some sort of flare right
now so it was good timing.

I hope everyone else is muddling through. May you all have a
quiet week.

Sox

[Debbie D]

Hey...Brain, glad the shots are helping, and I hope you don't revisit that paralysis. You sure have a strong backbone to deal with all that's challenging you as well as you are. The roids are probably making you hold water. Try to eliminate caffeine and stuff like that. Maybe you should ask for a diarrhetic (sp).
I'm doing all right, except for the double vision in my right eye when my glasses are off. Got an appt. with an opthamologist on Sat. a.m.
Had a massage yesterday...felt good. My DS & DIL got me a gift card last Xmas, and it took me awhile to get up the courage to get the massage, becaue 1)I don't really liked to be touched, and 2)I had a massage a few years ago, and the lady gave me such a deep tissue massage that I went into a fibro flare that lasted 24 hours. Not fun when you're on vacation.

The massage therapist that worked on me yesterday said my neck and back were really tight...then chuckled and said, "Well really, you're tight all over!"
Just can't seem to loosen up.

Sox, I hope that the neurontin increase helps you...I know how crummy that type of pain can be. You're on a lot of it. I was on 900 mg/day, but the neuro took me down to 600/day, since it helps retain weight and can cause fatigue.
If it doesn't work, I hope that Lyrica works for you.
Hope everyone has a good week without major incidents.Take care!

[sugarboo]

Sure! Draw me in with Krispy Kreams!!!!

[Jan4you]

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

[McGimpy]

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

[braingonebad]

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?

[sugarboo]

*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!!!!

[sugarboo]

Originally Posted by Jan4you

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

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!

[sugarboo]

Jan,
One more thing...a few years back when I had a bunch of blood tests ran, they found I carry the "Scleraderma" gene (The body turns into a rock ) So I understand having a gene of an autoimmune disease and not having the sx. I think I was more upset about turning into a rock, then turning into an electric pole <numb/buzz>

See how well you fit in with this motley crew? LOL!