Re: Band feeling around ribs

[Guest guest]

Marla, Thanks. I went to my doctor with various symptoms such as pain when I exhale and sweating without any reason and was always blown off, never doing any research to see if something was going on. I'm diabetic and they used that as a cause for every odd symptom that came up. When I first went to the hospital with numbness to my jaw and double vision they said it was my diabetes (even though my numbers were never that bad), a week later I went back to the hospital with the banding pain, I was sent home saying I was constipated, finally the third time back to the hospital with chest pains they admitted me, watched me for a week and couldn't figure it out. They sent me home. An hour later my wife gets a call that I had to go back in immediately for a possible embolism. She sent me by ambulance to a different hospital where after a day of tests determined it was neuro sarc. The first hospital wasted three weeks and misdiagnosed me. Sorry for rambling

on, my point here is I probably had sarc for months and never knew it. Doctors are not very acquainted with this disease and often give textbook remedies without listing to the patients symptoms and doing some research before sending them home with the wrong meds and diagnosis. I'm sure this has happened to many of us. I make it a point to always get several opinions before switching meds or new treatments. regards, RickMarla Bramer wrote: Rick I’m sorry to hear you got hit so hard out of the blue, I was eased into this disease, first in the lungs, then remission, then the lungs again, remission, then lungs and skin, then neuro, now everything, but this has been over the past 13 years. But know many get hit hard out the blue too. I hope things get better for you now. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Monday, October 29, 2007 10:18 AMTo: Neurosarcoidosis Subject: RE: Band feeling around

ribs Marla, That's good news about Lyrica, I hope it helps me as well. When I first got sarc I had pain in my legs as well. When I would stand for any longer than 30-60 seconds I'd be hit with Charley horse like pains in both legs from my ankles all the way up. My only option was to throw myself onto the bed and lie perfectly still until the pain went away. I couldn't walk for a month not to mention my hands were numb and painful and I was seeing double (not to mention the banding pain). I don't know where the sarc came from, I was in

good health up till then. RickMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: Hi Rick, not sure if neurontin contributed to the wt gain, maybe some, steroids was my worst time, gained wt, I am still trying to lose 4 years later, I just had a feeling like my legs were tree stumps hard to move, it got better with time, but I always had a little of that feeling until I went off it, now I feel that way when my left leg goes numb and I can’t move it, feels like dead wt. but overall the lyrica is

working well for me. Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer (AT) marykay (DOT) com www.marykay.com From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Monday, October 29, 2007 5:46 AMTo: Neurosarcoidosis Subject: RE: Band feeling around ribs Hi, Neurontin didn't make me gain weight. I went back to work and keep as active as I can despite the pain. It's important to get to your

ideal weight if you want to beat this thing. regards, RickDebbie <rozebudz36 (AT) yahoo (DOT) com> wrote: Marla, As to the heavy feeling that you got, did that mean you gained weight? I have been on it for a year now and have gained weight without changing my eating habits or anything. Anyway, do you think the neurontin results in weight

gain? Thanks, DebbieMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: Hi Rick, I was on Neurontin for about 3 years, then I was doing better and went off that lasted about 6 mos. Then my doctor put me on Lyrica, and it is working great with no side effects, the neurontin seemed like it gave me a heavy feeling. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rick JackSent: Saturday, October 27, 2007 8:52 AMTo: Neurosarcoidosis Subject: Re: Band feeling around ribs , The only thing that helps me is eating small meals and getting plenty of sleep. When I was released from the hospital several months ago I lost 30lbs but my waistline remained the same because of my stomach. No matter how hard I tried I could not pull my stomach in. Neurontin has helped me the most so far, but they just switched me to Lyrica to see if that will reduce the banding. regards, Rickwendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Rick, mine feels just like you describe. My stomach sticks out so muchit looks like I have instantly gained 10 pounds! And it's hard to breathe.I am usually very good at relaxation. Many years of yoga but I can'tcontrol any of this. - > One of athe biggest areas that sarc likes to attack isour muscles and ligaments. For many, this is a choice that docs liketo biopsy. > When the sarc is in our lungs, it's generally outside the lungsalso. The muscles and ligaments that surround our ribcage harden, andwhen we end up with a cough-- it's like

having an elephant on yourchest-- and you're trying to push him off. > I know whenever I get into a flare of my pulmonary symptoms, Ihave a rib that dislocates and pulls up onto the one above it. I havelearned to act as though I'm letting the air come into my lungs muchlike envisioning a ballon being blown up. By doing thisvisualization-- I'm able to allow the muscles to expand and stop thespasm that wants to strangle my lungs. > It has taken a long time to learn to do this-- but it truly doeshelp. Our natural reaction is to suck in-- and hold the musclestighter-- unstead of allowing them to relax and expand. > > Give it a try, and see if this helps,> Tracie> NS Co-owner/moderator> > > > > ---------------------------------> See what's new at AOL.com and Make AOL Your Homepage.> > > > > >

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