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Limbo Check In 2/27
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. :D 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? |
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.:(:confused: 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.:D May you all have a quiet week.:hug: Sox |
Wheeeew, BGB, I've been worried about you!
Have looked around here and seen no signs of you, none. Granted I just did a random sample ;) of threads but you were nowhere to be found. :( I'm glad the shots are helping. I don't know about water retention but cucumber slices on eyelids are supposed to help the puffies and they feel good too. Put a couple on your eyes and the rest into Taboulleh........yummy......:) Aww Sox, surely the switch will be dome with some sort of taper on the Neurontin? Sure hope so, sounds scarey otherwise. Sorry about the flare, except it is good the doc saw you while you were in it. :hug: First scooter ride at the commissary........wheeeeeeeeeeee........BUMP...... .. oooops!!! :o Well, TG that stand with the bananas was solid and hinged so the part I backed into just swung out. Had fun peeking out at the end of aisles to make certain I wouldn't run into "oncoming" people. Had a lot of folks smiling with me, really wasn't bad at all once I quit trying to reverse in tight spaces. :cool: Nancy T asked last week about my non cancer scare and was there a diagnosis. NO!! But it is part of what has tied up my neuro DX. I have an odd protein that caused the scare and can go with certain cancers and with certain syndromes that include CNS neuro problems. BUT, big but, I do not have cancer, do not have other things needed for the syndromes, like peripheral neuropathies. 3 mos. on oral prednisone, and I just made an appt in 2 weeks to see about getting off, although I'm a bit afraid to. The pain is better with the roids, but even on them everything is happening more often and lasting longer, with a worse residual when it is over. Crappy choice to have to make, but I'm worried about long term consequences, and frankly, since I don't have any of the things the prescribing Dr. thought I had, or anything that falls into her specialization, seems like it is time to get OFF!!!! I'm irked!! :mad: ARRRRRRRRRGGGGGGGGGGGHHHHHHHH! (in honor of GJ and with thanks for a big smile) And I think I am in desparate need of human contact, I just keep rambling or ranting of late. :o:( :hug: to all of you |
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!:D |
Sure! Draw me in with Krispy Kreams!!!!
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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 All:)Sorry 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:D Cheers |
Jan - Hunny, I'm so blown up you can tattoo *Goodyear* on my side and fly me over a ball game.
:p 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. :o Maybe I'm a prude? I dunno. Now if Johnny Depp was the massuese... that's another story. :D 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? :eek: 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 :rolleyes: 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 :p I don't wannnnnnnnaaaaaaa!! heheheheee......taking a pill is so much easier! But I hate pills. Gee, I'm never happy! Slap me!!!! |
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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! :hug: |
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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 |
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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. |
Thanks Brain.. well said.
I dont think its the DX that I want, Its not having a place to "belong" if I have no Dx that I miss, ya know? If it weren't for YOU and the Limbocheckin..I dont think Id still be around. And now, I'll just float away......aaaaahhhh........ |
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You've got NO hope of floating away now Jan...... I doubt there's anyone here that would allow it! You're here now, and you my dear are part of this big wide family! How dare you think about floating away..... Now you get that thought out of your mind or we'll have to be washing your mouth out with soapy water to get you thinking about other things! .....and this is for you......... http://dl2.glitter-graphics.net/pub/...wlqmk7c6no.gif |
Jan.... whtever you have, whatever you don't have, if you fit or don't fit anywhere, you've been a good friend to me when I needed one most.
Don't you dare go anywhere lady. :winky: :hug: |
Jan :hug:
I've tried to break away a few times, and I get lasso'ed back in :D What I finally decided, and this is just me, is that I can't live "in limbo", but I do know what I went thru, and I do know that my sx fit here. This is a very active board, and friendships are founded here thru more ways than MS. I suppose in a way, I'm in limbo because I don't have concreat answers yet, but until my body goes numb, or I lose sight in an eye, or something, I'm just living and moving on. I don't know what are bodies have, but I know we have friends here we can reach out to. I know we are not chasing a dx of MS, but as long as we are faced with the possibility, or have sx that others here can relate too, you are in the right place. You are home. That's what matters! Take some time if you need too...but chances are, you'll find it difficult to find a board where you feel this comfortable, so pull up a chair, relax, don't worry, and know that something brought you to this site for a reason, even if its just companionship as you sit at your computer....:grouphug: Spend some more time at the Stumble Inn....where friendships grow! |
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Good to know that he is treating me 'right' :D I go back on Tuesday...I NEED him :D LOL!!! |
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 :rolleyes:) 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> :D See how well you fit in with this motley crew? LOL! |
hey all..a bit late...like what 3 days....:eek:
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 |
Hi Sara!
I started with the soar throat on Monday or Tuesday, and the caugh :( Then I felt a bit better, and then yesterday, it hit hard again, and moved into the lungs. It's a nasty little cold YUCK!!! eeeee...ooooo..... Having been an RGM of a Jack in the Box and Taco Bell, I hear you on when the sun shines...no one cooks, and everyone thinks of one thing...fast food on the run :eek: Add in the folks that don't show and BUMMER! Hard to keep a smile! Welcome to (insert name) :D:D Can I help you? Would you like some Fries with that? :D:D How about an icy cold drink? :D:D And what about that apple pie?? :D:D :rolleyes::rolleyes::rolleyes::rolleyes: Going away for training? Getting promoted? I don't know how you do it with these sx! I tried to get back into it last year, when my sx started, and I thought I was going to be 6 ft under in nooooo time. I just crawled into a ball every night and DH was doing all the household chores...the only blessing! Hope the cold dosen't get you down to much....good to see you! :hug: PS: SARA: I should tell you, I did it for 17 years!! I had 13 different Jacks, and 3 Differnt TB's....was also the state training manager in the state of AK....I soooo know what you go thru! |
WOW thank you ALL for your support. :grouphug:
I was NOT thinking of leaving limbo check in at all, what I was saying is that the Diagnostic train is still going on. I WAS comfy just pluggin along. Now I have 2 other docs finding another place to deal with. I will be grateful as I see their expertise is trying to help me. For sure, something has been wrong with my autonomic system and now with this so called Narcolepsy I will learn yet more about myself. I am a very spiritual person, so I know I am on a plateau right now. Other than before I have no ambition to do anything, have no desire to try anything either. I just think is WINTER BLAHS!!! Dont ya? But thanks again for your GIVING.. I will work on my receiving LOL HUGS and gratitude :hug: Jan |
;) You are most welcome! We love our fine group here, anyone goes missing and we will hunt them down!! :D
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