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LIMBO CHECK-IN Wed 03/19/08
Hi GALS AND GUYS~!
PLEASE would you raise your font size to 3 or 4 at least? Helps us foggy-blurried-eye folks see better THANKS!!! Come on in...don't be shy. Let us know how you are doing today.. or any daze ok? Don't know where BRAIN is...whether she's busy.. hope you are ok Cathy dear~! I see my 2nd Neuro tommorow to get my CPAP RX probably and talk to him about his tentative DX of Narcolepsy with cataplexy. Also, still have eternal buzzing in my legs especially. AND my breathing problem has returned. Otherwise I am living... I see my supervisor today, this afternoon and I will need to address (or confront) her on what she wrote in my eval and never told me. It marked me down as less competent and is on my perm record. It reflects my merit raise. WHEW... bREATHE... Breathe... Wish me luck~! I feel positive and will pull out every spiritual tool I know. Know that I FEEL for you all, and truly care. Sit down with me, let's talk a bit. I'll be here for you. Warmly Jan What can I get you to eat? Drink? WHOOOWEEE |
Hi! Thanks for starting, Jan!
Weds is dh's day off, so it's really hard for me to get on here. :rolleyes: I wish we'd heard something from Tom (Freeinhou)... anybody know anything? I'm worried. :( As for me, same ol same ol. Ins co emailed me - they got the RX's I mailed - the pain patch and a muscle relaxer I can take during the day. They are being processed. No word if they're in stock or what. Hope so, and that I get them in a few days. Having a little trouble with vertigo and blurry vision and a lot of trouble with fatigue. But I think those always get worse when I hurt - pain takes a lot of energy. If it was nicer out I know I'd feel better. But the crocus will be open soon, and the daffs are coming up, and I just saw the first of the tulips coming too. So that helps! :) Good luck with the neuro, Jan. :grouphug: Hugs to everyone. |
Morning Ladies :D
[B]Been a bad time for me since Friday. Didn't sleep all night, repeat on Saturday, and up by 3am ever since. My low back pain is just not getting better. The drugs are not relieving it and as I do my PT exercises; I do this one on my belly, and tweek my legs, its an odd one...but I lay there and I cry. Not because it hurts to do it, but because I can't believe I HAVE to do this. The PT says it won't be forever, but I don't believe him. Its not his fault I hurt....what do I say to him? I go see the spine doc on Monday....guessing he will want to do another injection. Even a week's relief is worth it....it seems...until it wares off and all I have it the bill. How do I live like this the rest of my life. BOO HOO!! Oh, still having the numbness and tingleing in my feet and legs. Sick of it! Sick of all of it. Oh woes me!! Good luck to all with their weekly appointments and general searching for answers this week. :grouphug: |
Last week I saw the rheumie who:
a) referred me to the oncologist (clean cancer bill of health, and b) had put me on oral prednisone in anticipation of some uglies that it might help, and c) wasn't going to see me anymore because all rheumatological diseases had been ruled out. BUT, no-one else had taken over the Prednisone and it didn't fit anything left in the picture so I made an appointment to find out how to taper off. Well, this Dr. is a bulldog, Dr. House combo, and certainly not putting down my other Dr.s, decided to hang onto me until someone either came up with a specific demyelenating inflammatory disease that could be treated, or decided based on the all of the positive tests and clinical evidence to treat me "presumptively." In the meantime I have been started on 100 mg per day of Imuran, an immunesuppressant, because the damage is piling up in me...blood work every 6 weeks. will start the prednisone taper in one week. Attacks are more frequent, although while on the prednisone not as nightmarish, but I am left each time with worse residuals in terms of lack of function. The hope is that the Imuran will slow down the damage being done to my nerveous system. If it doesn't than a chemo drug will be used. I am supposedly getting set up for tip to toe MRIs again, but I haven't heard a thing about dates. Finally, I think it is beginning to truely wear me down although that might be the roids talking. My left eye, and the related trigem. neuropathy sensations around the eye are driving me batty and if I could only get rid of one thing...heal one thing, it would be my L eye...with the severe hearing loss, any reminder of damage to my eyes just scares the plooey out of me. See, I swore I was going to be short and to the point, but which point....Dr., pain, Sx, Rx, frustration??? I guess I shouldn't whine, at least everyone seems to agree I have a demyelenating disease involving the CNS, so I guess that's the equivelent of beachfront property on limbo island :rolleyes: :grouphug: I'm feeling terribly self centered not replying specifically to each of you this week, I am sorry, I am... |
Nice to meet you Jan!
I was newly dx with ms this Dec. Gave me a name for all that had been going on for years. Taking Beta.
Tired, tired, tired today! :thud: Debating on cutting back at work. I know I need to... so it's just a matter of how much. Going on like I am... is just not going to be an option for much longer. Hope the font is large enough. Glad you asked. The folks here seem so caring. I'm learning a lot. What a great community! :grouphug: Take Care, ~a new friend |
hey all,
been a while...I am same...suffer on humid days, and if overheat...learning a lot how to control body temp... I did have some dizzy spells while out of town for work, that wasnt fun...but not sure they were same dizzy...either way much worse..I would get the dizzies but then vomitting too..uggggg Otherwise, just kids and work keep me pretty busy... Hoping Tom is Aok too?? hugsss to all, sarah |
Hi everyone, not a lot going on with me, I updated my chiropractor post, so I guess this takes me out of limbo.
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Just an update:
Saw my PT yesterday and he did some stretching and pulling on my spine, some ice and alot of TLC....I bawled like a baby and he said he was surprised I was doing as well as I was :o He felt really bad for me. He is now going to show me some exercises I can do in my hot tub. I have to show up in my bathing suit next week :eek: Ha...Haha....ha ;) does that mean I should shave :cool::rolleyes:;):D I went and raided my mom's medicine cabnet and got a few vicodin to make it until tomorrow when mine gets filled (I'll pay her back) and last night for the first time in a week, I SLEPT!! A full 8 1/2 hours. I feel so much better today....and again I have hope. One day at a time.... Here's to the start of a good weekend!!! |
HI,all sorry i'm late.Just like me being the only guy in limbo it seems.:cool:Went to see neuro last week,Have to go back Sept. 10th
But at least he doesn't think it's all in my head:) Oh well hope everyone has a great day Cheers:D |
Late is when another week rolls around and a new thread is posted :D
September 10th? This year? Wow!! Are you having any symptoms? Good luck and glad you checked in!! It's good to have a man or two around here! :hug: |
Jan - any updayes? How did the doc visit go?
GJ - no, don't feel bad about venting. I get it. It's like you have to work so hard - for what? To still feel like carp? Feels like it takes all day to get thru the day feeling lousy. It's frustrating. You can say that - we understand. I wonder if the human mind can ever really accept that the body is messed up. I hope the PT starts doing some good, and not hurting. Give it a little while and see, okay? And I guess we should have kept on with the bathing suit check ins, huh? :rolleyes: Tante - it's okay. You have enough to think about your own, then to have to think about anybody else's. Very complicated, all of it. I hope they get it sorted out soon. I don't know if this makes any sense but I had a dream you were doing chelation? Friend2U - good font size, thanks! :) Sorry about your dx, but glad you have an answer. Hope beta works out for you. Maybe your doc could give you something for your fatigue. I'd ask - call and let him know it's affecting your work. Good luck with everything! Sarah - must be in the air, I have some vertigo too. Always something huh? lol... Hug those yunguns for me. Momx7 - I'll have to find your thread! :hug: McGimpy - soooo, what up with your neuro visit? Okay, went good, but no details? Too busy jammin are we? :cool: |
Thanks greenjeans.Yes Sept. 10th this year(it's my 4th neuro and the best)
Sx's since Oct 2005 Cheers Again :) btw: Hi Brain,not to much to report right now,and how is your guitar doing :D |
Well Mrgimpy, This is definately a disease about time for many of us! I do hope your sx are not interphering with daily life, mine tend to be annoyances that come and go, welllll...except for those whammies that make me wish I were dead :rolleyes:
Brain! My PT worked me over good yesterday :o:p I slept all night, pain has decreased by about 50% and he gave me a real pep talk about hope and a good future. I was bawling like a baby...he told me that I was doing pretty good considering....LOL!!! I left with my mascara all over my face, evident in the rear view mirror....LOL! I'm horrified about the bathing suit. It will definately be the ONE PEICE and NOT the bikini ;) Hope you are well this fine spring day!! |
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That's GOOD, about your pain level being down!!!! YAY!!!! :Head-Spin: I'm not bikini material right now either - and no way would I wear one for PT, no matter what! ;) But come summer that's what I'm wearing if it kills me, LOL. If summer ever comes that is. And hey, I lost my steroid fluffies already - woohoo! :cool: |
Hey Brain, I saw the 2nd neuro who gave me the RX for my CPAP. He will not DX narcolepsy/with cataplexy unless I continue those "episodes" after 6 months at least on the CPAP. Then he orders that daytime sleep study where you nap for them to see if you fall into REM sleep.
Oh, he wants to do an EMG test because I mentioned that my arms sometimes go numb when I am sleeping at times. HE wants to rule out Carpal tunnel. I DONT WANT AN EMG!!! I had one mucho years ago and it showed nothing. SHould i have one? I have buzzing but what would it help by having one? OK the RN finds the letter from the 2nd Rheumy that suggests it may be autonomic problems that cause those "episodes" I have had the last 16 years. But the neuro didnt seem to address it. Well.. perhaps the fact its may be an autonomic problem is somewhere down the line as HE knows I need to BREATHE better first. Oxygen..rather a necessity, right? lol He DID say he doesn't think its MS after I mentioned that I am in limbo with MS. BUT he never knew any of my symptoms or history. OK ok.. I'll go along with this program and stay with my nutritionist who I swear wil always find something to treat as I am always in the "Red zone" in his evals. Stay tuned... thanks for asking Jan |
Hi Jan!
Wow, they just pull you this way and that don't they!! Poor thing! Can they schedule a nap? LOL!! Let us know what happens! Hope its a wonderful spring day for you...feels great around here...almost time to break out the shorts....errr...maybe go get a fake tan first :) Hugs! :hug: |
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