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Limbo check in 4/9
Hi folks!
Well, I hope y'all find this today. Wish I could get at this like the old days, earlier in the morning. Dh has stuff to do online though. So I hafta wait for him to get done. hope you don't mind. Anyhoo... it was beautiful out yesterday and I cleaned out some flowerbeds. Everything is coming up! Yeah, I'm sore today, but those patches are da bomb!!!! I never could have done it without them. and I'd be dying so bad if I'd done a 1/10th that much without them. :) I worked hard enough to get a normal kind of sore - since when could I do that? That's a good feeling. I hope they keep on doing what they're doing. When I go see my PCP next week, I'm gonna bring them in to show him. He'll want to know. Maybe he can offer them to other patients. Hey, they took me from a miserable lump on the couch to gardening and too busy to whine on the forums! :cool: Hugs and sunshine and spring flowers to all of you! :grouphug: |
Hi all...darn it, I still can't get the size of these letters to grow...grrr.
Anyway, Brain, I am sooo glad that your patches are helping you. Don't you feel like dancing, having a normal type of ache??? Hope they keep working for you! It was so hard to leave Hawaii...my DH and I truly felt as if we were in paradise. I had 2 incidences where my balance got whacked. Both times, I had gotten overheated. We were walking and suddenly when I tried to take a step, the sidewalk felt as if it was tipping sideways and I started to tip over. My DH ran over and grabbed me and helped me walk slowly until it dissipated. Otherwise, no problems except the RLS. I saw my pcp on Monday. I told her I was very angry at my neuro...I got rejected for long term health care because of "possible MS and cognitive difficulties." Before I left for Hawaii, I saw the neuro's nurse practitioner. She asked me to squeeze her hands, hold out my hands, walk, you know, all that stuff. She called my neuro on the phone, and then came back and announced that I don't have MS, it's just anxiety and depression. Then why did he tell the insurance company that I have possible MS??? My pcp said that the sxs aren't caused by depression or anxiety, that they indeed neurological. I am going to have a neruopsych exam, and if that comes back abnormal, I'm going to call the neuro and blow my top. He needs to make up his mind. I have been so tired this week...probably getting used to the 5 hr. difference again. Plus, my inlaws are high maintenance since we got back...lots of dr. appts, shopping, etc. It wears me out mentally. Well, I hope everyone had a good week. It's cold again, which is not fun!! Take care, all! |
WOW Brain seems like the pain mgt regime is working huh? Playing guitar yet??
I am wondering if I am in some kind of flare. The tingling in my face that started this journey 4years ago as returned. It started after that half face pain I inquired about a few weeks ago. Now tingling and numbing feeings traveling around my face every day. Not to mention the BUZZING in my leg/foot. But in 2 weeks I get the EMG. I'll mention it to this neuro then. My back is locked up more and more now. Beginning to think the spasticity that I have in my legs all the time has locked up my back. I called me PCP Brain and asked to return to Methocarbam 750 3 times a day. IS that sounding right? I am using the CPAP but not all night or I cannot stay asleep it seems. Found my DH's former neurologist till she moved away. She knew my DH died but we could never talk. She knows ALL about my DH's dad and the interference. She is making herself available to me as she misses my hubby too. I loved her! She would listen to our thoughts and feelings and even if she disagreed she NEVER put us down. She was SOOO caring. Now she specializes in women with epilepsy. So.. I am in blah blah land of late Know that I will perk up as Spring is TRYing to come around but we're being tortured with nice then cold etc. AT least no more snow !! ENJOY your garden and send us pics ok? Take good care everyone Jan |
Debbie - any chance you can find a new neuro ? I think I'd switch. He does not seem to take you too seriously.
Glad you had fun in Hawaii though. Maybe another trip next year? :) Jan - I'm taking the methocarbam 500 mgs 2x a day - that's how it's written, but I usually don't need 2, sometimes don't take any. I take a half of the zanaflex most nights, and that's good enough. I wonder if my legs are bad from my spine issues? I used to think it was the other way around, but now I don't think so - I know my spine is wacky and spastic, and my legs feel pretty good if I'm on muscle relaxers. I don't think we notice how bad our back spasticity is. and we do note the effect is has on our legs and gait. See what I mean? I'm just amazed that we can have so much wrong and still walk! And that we can try so many meds and such and not find relief, then something so simple can do so much good. Who'd have thunk it? Which is why I never give up, ya know? And yeah, playing guitar and goofing with the baby, the dogs, the birds. So much to do, so little time! Wish I knew what to tell you with the tingling... are you taking any magnesium? That sems to help me. |
Well, I gotta run gang. Gonna get my hair cut today, and other fun stuff to do! Love you all!
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Good to see everyone...
I forgot to check in the past few weeks...nothing was going on. Today I'm getting an EMG though. Watch me go, here I go.....:rolleyes: More snow, more cold....very depressing :( Hope all is well or getting better for the rest of you :) |
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HAWAII....Ohhhhhh....my favorite place to go :) Been there 4 times, I'm overdue and I could use some Aloha!! I never seem to want to leave when I am there....Its like a good drug that calls you back and says STAY!!! Glad you had a good time.... |
Ahhhhhh, Cathy, anytime you get on is a good time. :)
What are those patches again? I need to make note of them, just in case, and also to remind me that there is a bit more joy in a friend's life. Always a good thing to hold near. Debbie and Jan, i just get frustrated wishing I could wave a wand over this sometimes seemingly G-d forsaken Limbo Island, dredge up an answer, some peace...at least some Dr. (specialist) who would grab on and shake all symptoms till, well, even then sometimes it is just luck, and, for some, time. Me? in the hospital for 3 days after Imuran/Prednisone gave me a case of acute pancreatitis (with no pain ???) and through the roof Liver function tests..thought I had Salmonella from cantalope...nausea and diarrhea, for 2 wks. When I started having an off and on fever from 96.5 to 102.4, vomiting and lost 6 lbs in about 4 days I drove myself, at the rheumies insistance to the ER...in a cold drenching sweat. IVs, black and blue arms, fixed the nausea and then wouldn't let me eat....sadists...:rolleyes:. Had me in tears 'cause they were talking about keeping me till my counts were down, and I had a long awaited NEURO appt on Monday. Counts were not down but they let me out since I wasnn't vomiting, and I had blood drawn at PCP 's yesterday, then again on MON.. ***New:Counts are down, not normal but down...yay! will check again on Mon. Now, Neuro visit: Last weeks check in I said my recent MRI looked different to me....1st brain MRI that looked like anything in about 23 years. It was different, I have lesions, the only thing I still needed for my Dr. to giuve me a dx. ...and this week I am doing both a "Limbo Check-In," and a "Limbo Check-Out." I have MS. I start REBIF (My Neuro is aggressive (if liver will allow) as soon as LFTs are back to normal. I met with his MS nurse, who I already knew, got tons of material (on Copaxone also), and started on PROVIGIL yesterday. No long story now, but my road started w/a sx and clinical time and space dx of MS in 1979...taken back a few years later with 1st normal MRI. Hearing loss (severe bilateal), vision, bowels, bladder, all happened real early on...tingly stuff didn't happen till late. Every wierd dx in the book, gave up, dd died, life went on, and now, almost 30 years later, through a couple of shear flukes or, as Neuro called them as he rolled his eyes, accidents, I have a diagnosis. O Bands, EPS, symptoms out the ying yang,and now, lesions to boot.... Dh doesnt have to read me my autopsy. :rolleyes: I am relieved....overwhelmed by amt. of info to read, and still sick from the drugs...but so relieved, this past year has been a rapid down hill spiral, maybe the Rebif will help slow it down. I hope no one else takes this long, but sometimes.... :grouphug: |
Oh Tante!
So you are saying you got your DX finally? It seems obviouse but you don't come out and say it. I'm so glad you finally got an answer! There is hope today that others will one day know what ails them as well. I'm so sorry that its true, but happy you finally know. I hope the new meds you start on work well for you and you are able to get things stopped right where they are, until a cure is found. Many many :hug:'s for you and your family. |
WOW Tante, I am happy for you. confused but happy.
Maybe I am not following right, but NOW they are finally diagnosing you?? WHat happened? Where did you find this doc?? I am sorry for your losses and changes, and admire YOU for hanging in there... come on and say HI ok? Waving...as you leave limbo island... sniff...sniff.. but YEAHS too Jan |
Hi everyone, I don't really have any news to report. I see the new PCP on Monday.
I'm feeling awful today, each day the headaches and nausea gets worst. :confused2: What really gets me is the headaches doesn't stay the same for very long, I mean like ever few minutes it might be different. It goes from really bad to very mild and sometimes in between with-in minutes but NEVER goes away. |
Jan and GJ,
LMBO! I sure beat around the bush didn't I? Sorry, but I guess after decades of MS just lurking, it'll take awhile to be able to say it. I went back and edited my post, but yes I do have MS, and this is the second time I have been diagnosed with it. The first was about 27.5 years ago...pre MRI. Jan, it is a combo of Dr.s, and a lot of freak happenings test wise, you are more likely to see a month of blue Sundays than to get these tests to do right like this again. ;) We are relieved. I am worried about the Interferons (Rebif) particularily right now after the hospital trip for my liver, but I understand and am willing to risk it, besides, it is only 3 shots a week, Copaxone is daily, I believe, and I hate needles. :eek: Yes, there is hope for others, although I hope your answers aren't hidden so bizarrely or for so long. Sometimes, as in my case, it is knowing when (and who) to push, it is timing, and it is luck... My neuro called it an accident, I call it a year of freak test flukes, whatever, the last one, the MRI lesions just fell into place. Thank you all, and if it isn't too hard on y'all I'd like to pop in a bit, I'm more comfortable here so far. I think the "outer world" scares me. keep fighting, and believing, in yourself most of all. eeeew, that sounds pompous, but i hope you know I mean that in a good way. :hug: to all of you |
Tante,
I am really glad you have an answer for the sxs that have been bothering you for so long. I hope that Rebif works well for you and slows down the MS. You had quite a scare with pancreatitis!! I hope that you're back to normal after that...:hug: Good luck, and do keep in touch with us islanders, hear? Bring some margaritas when you visit! |
Tante!
I suspected it was hard to say the words....I get it. It made me stop and wonder....like it's a dream huh? LMBO at you!!! You stay right here and comfortable and take the pace that is right for you. Its great knowing you :) Best to ya, :hug: |
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Thanks, I heard about a fibro study going on here so I filled out my info and someone is going to call me and let me know more about it. The odd thing was they asked questions about migraines so maybe it has something to do with meds for fibro migraines. |
:eek: That's great Julie!!! I think this study would be awesome for you! You'll find out for sure and can ask tons of questions....or rather...answer them...or BOTH!! Wow, you should get tons from this experiance!! I'm soooo happy for you!! Fresh beginnings....Happy Dance! :Dancing-Chilli::Head-Spin:
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I just can't believe your luck! Heck, we never get studies here...we are lucky to have a doctor to go to :rolleyes: LOL!! Man oh man....it's like hitting the jackpot, or finding the end of the rainbow....or something like that! :Trapeze 2:
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The timing on this is SO great! |
Tante- :hug:
Wow! That was some crazy ride! So sorry about all that, but I am glad finally you got a dx.... Wish I were next door, and I could swing in and help out while you recover from all this. Know that you are in my prayers, sis. And you better pop in OR Else! LOL! :cool: Oh and the patches are called Flector. Hey, mind if we all rub your head? Maybe you got some *Check out* mojo we can catch. :D |
Check out Mojo
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Brain, sure y'all can rub my head, just do it soon before I finish my prednisone taper. That stuff really makes my hair grow!! Once I'm off it (2 more wks I think) hands off my lucky head or I'll be bald...:D I need to look up Flector, as the pred wears off, nights are getting worse, more Baclofen or???? |
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