Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Anybody know good doctors in TX? I'll be moving to El Paso soon. Chantal ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Chantal, DO NOT get surgery yet. Clearly, your doctor does not know much about vulvodynia or vestibulitis, as there are tons of treatments and options for you to try before you even begin considering surgery. These treatments and options all depend on the symptoms particular to your vulvodynia -- type of pain, location of pain, whether you have any other associated problems (pain elsewhere, indications of yeast, bacteria, skin disorders, etc) and a host of other factors. Definitely find a new doctor in Texas, and not for a second opinion, but for a doctor who has some knowledge of this disease. Maybe if you post to the group where in Texas you are moving to, people can come up with suggestions for doctors to try. And you are lucky to have found this forum. You will get all the moral and emotional support you could possibly as for from a group of women who you probably will never meet. My suggestion for how to " handle " this disease: become proactive, research on the internet and educate yourself as much as possible, because most doctors do not know enough about this problem to be able to come up with all the options for attempted treatments on their own. And know that people DO get cured, and even more eventually DO find some relief from their pain. Feel free to post more about your problem and its causes and we'll try to point you in the right direction for other treatments, or at least arm you with information to have when you go to your next doctor. Glad you found us......Good luck! V. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Hi Chantal, welcome to the fourum. You will get lots of great information and support here. I completely agree with . A doctor saying you need surgery at this stage is like a doctor telling someone who just developed migraines that they need brain surgery! There are many many options to try before you resort to surgery. Furthermore the long term success rate of people with VVS having surgery is not 100% by far, so it may not even help you. Definitely find another doctor who has a clue, and do a bunch of research online before you go to them. A good place to start is the Vulvodynia homepage, http://www.vulvodynia.com/default.htm. I also have a bunch of pages bookmarked so email me if you need help finding more info online. Sometimes I just can't believe doctors can be so clueless about vestibulitis and vulvodynia! It's scary! We as patients trust our doctors to know what's best for us, but I'm sure many people here can tell you that just isn't always the case. We have to take control of our care and be very smart about the doctors we with our care. Good luck, keep us updated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Hello Chantal! I was just recently diagnosed with vestibulitis as well. I know what you mean about the support. My husband is my support. He is wonderful. I am very suprised that your doctor recommended surgery as teh first step as well. I am currently being treated by two creams and hoping for the best. Definately get a second opinion. I hope for the best for you. I know its hard starting a new life with a wonderful man and already having this mountain to climb. I was married a year and half ago and have had this problem since day one. But if you two can make through this you can make it through anything. It is amazing how God work through these things! Hoping for the best, Deidre ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 My doctor was completely against me taking nonsurgical treatments besides biofeedback which would follow surgery. She said my vestibulitis was severe, and said that creams and what not would not work. So I am very confused... But I will definitely get at least a second opinion. However, my vestibulitis isn't that bad, in the sense that I only feel pain during intercourse. I have no problem riding a bike and doing all kinds of things without feeling the pain. Anyway, thanks for the advice . This is a whole new world for me and I have so much to learn! I would appreciate if you could give me those bookmarks you have. Thanks! Chantal >From: r_marlene@... >Reply-To: VulvarDisordersegroups >To: VulvarDisordersegroups >Subject: Re: Newbie >Date: Wed, 19 Jul 2000 23:00:41 -0000 > >Hi Chantal, welcome to the fourum. You will get lots of great >information and support here. >I completely agree with . A doctor saying you need surgery at >this stage is like a doctor telling someone who just developed >migraines that they need brain surgery! >There are many many options to try before you resort to surgery. >Furthermore the long term success rate of people with VVS having >surgery is not 100% by far, so it may not even help you. >Definitely find another doctor who has a clue, and do a bunch of >research online before you go to them. A good place to start is the >Vulvodynia homepage, http://www.vulvodynia.com/default.htm. I also >have a bunch of pages bookmarked so email me if you need help finding >more info online. >Sometimes I just can't believe doctors can be so clueless about >vestibulitis and vulvodynia! It's scary! We as patients trust our >doctors to know what's best for us, but I'm sure many people here can >tell you that just isn't always the case. We have to take control of >our care and be very smart about the doctors we with our care. >Good luck, keep us updated. > > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Hi Deidre! I'm sorry you had to go through this too in your marriage! I am not a particularly religious person, but I do believe there is a reason for everything, and so I can only hope this will make us stronger. It seems like everybody I have to so far has said that I should not go through with the surgery. My doctor discouraged me from taking any kind of nonsurgical treatment, and I'm puzzled. Chantal > >Reply-To: VulvarDisordersegroups >To: VulvarDisordersegroups >Subject: Re: Newbie >Date: Wed, 19 Jul 2000 19:30:20 -0500 > >Hello Chantal! I was just recently diagnosed with vestibulitis as well. >I know what you mean about the support. My husband is my support. He is >wonderful. I am very suprised that your doctor recommended surgery as >teh first step as well. I am currently being treated by two creams and >hoping for the best. Definately get a second opinion. I hope for the >best for you. I know its hard starting a new life with a wonderful man >and already having this mountain to climb. I was married a year and half >ago and have had this problem since day one. But if you two can make >through this you can make it through anything. It is amazing how God >work through these things! > >Hoping for the best, >Deidre >________________________________________________________________ >YOU'RE PAYING TOO MUCH FOR THE INTERNET! >Juno now offers FREE Internet Access! >Try it today - there's no risk! For your FREE software, visit: >http://dl.www.juno.com/get/tagj. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Hi Guys, We have a new member I am sure to get along with on one thin! LOL Her email is pizzahutqueenhotpop (DOT) LOL Welcome, and tell us your story, try to also join us in chat. One and only rule is no saying 'sorry' , it is not our fault and we spend too much time apologizing. " Hope is a thing with feathers that perches in the soul " Hugs and a pain free minute, Deb Deb Genatossio Listowner egroups rsd-crps Deb Genatossio Planning Director for American Society for RSD/CRPS (ASRSD/CRPS) Ma. Charter Director PO Box 1397, Abingdon, MD Â 21009 Toll Free Hotline: Â 1-866-OUR-PAIN Main Office: (office hours: Mon, Wed, Fri 10 am to 3 PM) online membership: ASRSD_CRPSegroups http://www.americansocietyforrsd-crps.org http://americansocietyforrsd-crps.org/societypages/handbook.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2006 Report Share Posted November 27, 2006 Welcome Amber.Get started on an MS med as soon as possible. They have shown positive results on a lot of people. You're going through what I did. No lesions but CSF showed. Back in 2003 they wouldn't put me on an MS med. Now they do if you're showing positive MS signs. Which your neuro will discuss with you.I'm surprised your neuro hasn't put you on steroids. That will quiet a flare pretty quickly. Good luck with it all. I can't take neurontin. I was put on something else, and the name totally escapes me right now. Each person is different.We're here for any question you may have.ShirleyAmber wrote: Hello Everyone! My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn't work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments? I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia...I don't want to take anything that makes me too out of it. Thanks for listening, and I hope to hear your suggestions soon. Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Tom, I would love a book or two. I get paid on friday, so if it's better to wait then I will. I have a paypal account, so if you send them out I can reimburse you on friday. However it's done I would love to read the books. Thanks so much, Amber Newbie Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Tom, I would love a book or two. I get paid on friday, so if it's better to wait then I will. I have a paypal account, so if you send them out I can reimburse you on friday. However it's done I would love to read the books. Thanks so much, Amber Newbie Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Hi Amber:I'm glad you joined us but sorry to hear you have MS. So your neuro diagnosed you without a positive MRI? That's interesting. I'm sure there are a few undiagnosed on this group who will also find that interesting. What muscles are tight? Do you have spasms along with the spasticity? If Baclofen didn't work then maybe Zanaflex would. I've heard of people who didn't respond to Baclofen but did to Zanaflex or vice versa. What kind of pain are you having? There are various drugs that work depending on the type of pain. Sharon Right now I'm having amnesia and deja vu at the same time.. Newbie Hello Everyone! My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments? I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it. Thanks for listening, and I hope to hear your suggestions soon. Amber Access over 1 million songs - Yahoo! Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Sharon, My neuro is calling it Early MS because of the symptoms, progression, and the waxing and waning of the severity of symptoms. My MRI's have been negative so far, my spinal tap was positive for O-bands. In July 2005 I went numb over the course of a few days from the collarbones down starting in my left leg, up my left side into my arm and hand, then it started at the bottom of my right foot, up my right side into my right arm and hand. My left leg became paralyzed, I had hypersensitivity from the collarbones down, too. I am hyperreflexic, have a positive babinski sign in my right foot. My spinal tap, blood work for everything under the sun, and mri's were all negative. I got IV steroids for 4 days, given a cane, and a script for an oral steroid taper, and sent on my way. I was discharged with idiopathic neuropathy. I went home and my lower back and legs cramped up so hard I couldn't walk without my cane...I could barely get out of bed. Over the course of 10 months I underwent outpatient physical therapy and was unable to go back to work...hard to do floor nursing with a cane in hand! My new neurologist put me on baclofen and neurontin, and I made my come back...I was a new woman. In May my spinal tap showed positive O-bands. So, my neuroligist is calling it the early stages of MS. He said if I had another exacerbation he would consider putting me on MS drugs, but would like to wait and see if it happened. I hoped I wouldn't have to. In July I was strong enough to go back to work, so I found a smaller ICU that was quieter than the Trauma II ICU I used to work in. So, I made my come back. They know my story, and are very considerate. Now I have a burning/cramping/throbbing pain from the middle of my back down both butt cheeks, and down my entire left leg and the top half of my right leg. The band around my ribs and chest is tighter, and I'm getting electric shocks/spasms in my arms and hands. They tried maxing my baclofen, they've had me maxed on neurontin for three days, vicodin doesn't work, heat, cold, stretching, walking, tylenol, and motrin haven't lessened the pain. I'm calling my neuro again tomorrow to figure out what else we can try. I can't take this for much longer. I feel like all I've done is talk about myself in long rambling postings...I'd like to hear other people's stories. Other people have to have similar stories. I'd like to hear them, too. Thanks, Amber Newbie Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Access over 1 million songs - Yahoo! Music Unlimited. Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Hi amber.im not sure if we have talked before.but my situation is very similiar.I have had a million tests done as well.my neuro is sending me to the university hospital for a second opinion.she thinks I have something called devics disease.from what I understand it is more likely to effect the upper body as well as the lower body more in devics than ms.and most tests for that disease come back negative.they have to do a spinal and send it in for special testing at the mayo clinic.Is it progressing quickly?hugs,cassy [amber_faith_rn@...] wrote: Sharon, My neuro is calling it Early MS because of the symptoms, progression, and the waxing and waning of the severity of symptoms. My MRI's have been negative so far, my spinal tap was positive for O-bands. In July 2005 I went numb over the course of a few days from the collarbones down starting in my left leg, up my left side into my arm and hand, then it started at the bottom of my right foot, up my right side into my right arm and hand. My left leg became paralyzed, I had hypersensitivity from the collarbones down, too. I am hyperreflexic, have a positive babinski sign in my right foot. My spinal tap, blood work for everything under the sun, and mri's were all negative. I got IV steroids for 4 days, given a cane, and a script for an oral steroid taper, and sent on my way. I was discharged with idiopathic neuropathy. I went home and my lower back and legs cramped up so hard I couldn't walk without my cane...I could barely get out of bed. Over the course of 10 months I underwent outpatient physical therapy and was unable to go back to work...hard to do floor nursing with a cane in hand! My new neurologist put me on baclofen and neurontin, and I made my come back...I was a new woman. In May my spinal tap showed positive O-bands. So, my neuroligist is calling it the early stages of MS. He said if I had another exacerbation he would consider putting me on MS drugs, but would like to wait and see if it happened. I hoped I wouldn't have to. In July I was strong enough to go back to work, so I found a smaller ICU that was quieter than the Trauma II ICU I used to work in. So, I made my come back. They know my story, and are very considerate. Now I have a burning/cramping/throbbing pain from the middle of my back down both butt cheeks, and down my entire left leg and the top half of my right leg. The band around my ribs and chest is tighter, and I'm getting electric shocks/spasms in my arms and hands. They tried maxing my baclofen, they've had me maxed on neurontin for three days, vicodin doesn't work, heat, cold, stretching, walking, tylenol, and motrin haven't lessened the pain. I'm calling my neuro again tomorrow to figure out what else we can try. I can't take this for much longer. I feel like all I've done is talk about myself in long rambling postings...I'd like to hear other people's stories. Other people have to have similar stories. I'd like to hear them, too. Thanks, Amber Re: Newbie Hi Amber: I'm glad you joined us but sorry to hear you have MS. So your neuro diagnosed you without a positive MRI? That's interesting. I'm sure there are a few undiagnosed on this group who will also find that interesting. What muscles are tight? Do you have spasms along with the spasticity? If Baclofen didn't work then maybe Zanaflex.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Cassy, What kinds of symptoms do you have? What tests have they done so far? Are you able to work? My initial symptoms came on quickly, but my new ones (more pain, muscle spasms/electric shocks) snuck up on me in the last month. Looking forward to hearing more, Amber Re: NewbieHi Amber:I'm glad you joined us but sorry to hear you have MS. So your neuro diagnosed you without a positive MRI? That's interesting. I'm sure there are a few undiagnosed on this group who will also find that interesting. What muscles are tight? Do you have spasms along with the spasticity? If Baclofen didn't work then maybe Zanaflex.... Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Hi Amber, Send me your mailing address and I'll send the books. Regards, Tom Newbie Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Hi Amber! I'm a nurse for home health in Texas. You really have to play with your meds till you get the right combo. I'm on klonipin flexeril and cymbalta with maintenance ibuprofen and am in remission right now. This summer I was soo bad I was walking with a cane and my MD filled out papers for disability plates. Now people give me funny looks when I pull up! 'Amber wrote: Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn't work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia...I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 , I am really going to push for cymbalta (if my neuro ever calls me back)! It seems to be the drug of choice. It's go great to hear from the other nurses out there that are working and living it up. Did you go into home health before or after your diagnosis, and what symptoms do you usually have? When did you get sick initially? Thanks, Amber Re: Newbie Hi Amber! I'm a nurse for home health in Texas. You really have to play with your meds till you get the right combo. I'm on klonipin flexeril and cymbalta with maintenance ibuprofen and am in remission right now. This summer I was soo bad I was walking with a cane and my MD filled out papers for disability plates. Now people give me funny looks when I pull up! 'Amber <amber_faith_ rnyahoo (DOT) com> wrote: Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Everyone is raving about the all-new Yahoo! Mail beta. Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 At times a good massage therapist along with your antispasmadics will help. 'Amber Gindhart wrote: Sharon, My neuro is calling it Early MS because of the symptoms, progression, and the waxing and waning of the severity of symptoms. My MRI's have been negative so far, my spinal tap was positive for O-bands. In July 2005 I went numb over the course of a few days from the collarbones down starting in my left leg, up my left side into my arm and hand, then it started at the bottom of my right foot, up my right side into my right arm and hand. My left leg became paralyzed, I had hypersensitivity from the collarbones down, too. I am hyperreflexic, have a positive babinski sign in my right foot. My spinal tap, blood work for everything under the sun, and mri's were all negative. I got IV steroids for 4 days, given a cane, and a script for an oral steroid taper, and sent on my way. I was discharged with idiopathic neuropathy. I went home and my lower back and legs cramped up so hard I couldn't walk without my cane...I could barely get out of bed. Over the course of 10 months I underwent outpatient physical therapy and was unable to go back to work...hard to do floor nursing with a cane in hand! My new neurologist put me on baclofen and neurontin, and I made my come back...I was a new woman. In May my spinal tap showed positive O-bands. So, my neuroligist is calling it the early stages of MS. He said if I had another exacerbation he would consider putting me on MS drugs, but would like to wait and see if it happened. I hoped I wouldn't have to. In July I was strong enough to go back to work, so I found a smaller ICU that was quieter than the Trauma II ICU I used to work in. So, I made my come back. They know my story, and are very considerate. Now I have a burning/cramping/throbbing pain from the middle of my back down both butt cheeks, and down my entire left leg and the top half of my right leg. The band around my ribs and chest is tighter, and I'm getting electric shocks/spasms in my arms and hands. They tried maxing my baclofen, they've had me maxed on neurontin for three days, vicodin doesn't work, heat, cold, stretching, walking, tylenol, and motrin haven't lessened the pain. I'm calling my neuro again tomorrow to figure out what else we can try. I can't take this for much longer. I feel like all I've done is talk about myself in long rambling postings...I'd like to hear other people's stories. Other people have to have similar stories. I'd like to hear them, too. Thanks, Amber Newbie Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Access over 1 million songs - Yahoo! Music Unlimited. Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2006 Report Share Posted December 2, 2006 I was working for home health already due to my last episode. My first flare was in 1999, second 2000, then i was symptom free for 3 yrs(had a baby and sort of had a remission time) then in 2004 I was 1st assist for a surgeon and also worked with him in his office. I woke up I day and my left arm didn't work. It finally came back but seemed weak compared to what it was. So I moved to home health. I have bladder and bowel dysfunction, cognitive problems, problems with my balance, loosing peripheral vision weakness, fatigue, have to use a cane.....but I only have one lesion right now. Which is good since know my company is going to add short and long term disability. 'Amber Gindhart wrote: , I am really going to push for cymbalta (if my neuro ever calls me back)! It seems to be the drug of choice. It's go great to hear from the other nurses out there that are working and living it up. Did you go into home health before or after your diagnosis, and what symptoms do you usually have? When did you get sick initially? Thanks, Amber Re: Newbie Hi Amber! I'm a nurse for home health in Texas. You really have to play with your meds till you get the right combo. I'm on klonipin flexeril and cymbalta with maintenance ibuprofen and am in remission right now. This summer I was soo bad I was walking with a cane and my MD filled out papers for disability plates. Now people give me funny looks when I pull up! 'Amber <amber_faith_ rnyahoo (DOT) com> wrote: Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Everyone is raving about the all-new Yahoo! Mail beta. Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2006 Report Share Posted December 2, 2006 I was working for home health already due to my last episode. My first flare was in 1999, second 2000, then i was symptom free for 3 yrs(had a baby and sort of had a remission time) then in 2004 I was 1st assist for a surgeon and also worked with him in his office. I woke up I day and my left arm didn't work. It finally came back but seemed weak compared to what it was. So I moved to home health. I have bladder and bowel dysfunction, cognitive problems, problems with my balance, loosing peripheral vision weakness, fatigue, have to use a cane.....but I only have one lesion right now. Which is good since know my company is going to add short and long term disability. 'Amber Gindhart wrote: , I am really going to push for cymbalta (if my neuro ever calls me back)! It seems to be the drug of choice. It's go great to hear from the other nurses out there that are working and living it up. Did you go into home health before or after your diagnosis, and what symptoms do you usually have? When did you get sick initially? Thanks, Amber Re: Newbie Hi Amber! I'm a nurse for home health in Texas. You really have to play with your meds till you get the right combo. I'm on klonipin flexeril and cymbalta with maintenance ibuprofen and am in remission right now. This summer I was soo bad I was walking with a cane and my MD filled out papers for disability plates. Now people give me funny looks when I pull up! 'Amber <amber_faith_ rnyahoo (DOT) com> wrote: Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Everyone is raving about the all-new Yahoo! Mail beta. Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 Hi Amber! It's nice to meet you. ) I'm Challis... no dx yet. I've been to two Neuros now, the first left a bit to be desired. LOL The second is nice, I met him first as my son's Neuro. We're "waiting" now. I've had the lab work, the in-office evals, and an MRI of my brian and brain stem. My new Neuro wants to do a Lumbar Puncture if anything changes and stays changed for at least a few days. My husband, , and I live in Arizona and we have four children... , 19½; , 16; Jenna, 6½; and Maya, 3. Ah yes, and my Mother has MS, with her dx coming some years ago. She's Sharon (Wobbletowalk), our list's fearless leader. lol Welcome aboard! ) Challis Amber wrote: Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn't work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia...I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 Thanks Challis! It's great to meet you, and your mother! I hope you post more with us! Amber Re: Newbie Hi Amber! It's nice to meet you. ) I'm Challis... no dx yet. I've been to two Neuros now, the first left a bit to be desired. LOL The second is nice, I met him first as my son's Neuro. We're "waiting" now. I've had the lab work, the in-office evals, and an MRI of my brian and brain stem. My new Neuro wants to do a Lumbar Puncture if anything changes and stays changed for at least a few days. My husband, , and I live in Arizona and we have four children... , 19½; , 16; Jenna, 6½; and Maya, 3. Ah yes, and my Mother has MS, with her dx coming some years ago. She's Sharon (Wobbletowalk) , our list's fearless leader. lol Welcome aboard! ) Challis Amber <amber_faith_ rnyahoo (DOT) com> wrote: Hello Everyone!My name is Amber, I'm 29...and almost newly diagnosed. I had a major episode last year, and have been told that this is the early stages of MS. So far nothing on my MRI's, but my O-bands were positive in my CSF. I'm in the middle of another episode, and am waiting for another round of MRI's, neuro appointments, and med changes. Good times, eh?! They tried maxing me on baclofen...didn' t work, so they brought that back down and are trying maxing me on neurontin. I'm still a hurtin', and my muscles are still tight as a drum. Anyone else go through this song and dance? Is my neuro following the right treatments?I haven't started any MS meds (rebif, avonex,etc.) We're supposed to discuss that at my appt. on Dec. 7. Any suggestions? I'm an ICU nurse in a cancer treatment hospital in Philadelphia. ..I don't want to take anything that makes me too out of it.Thanks for listening, and I hope to hear your suggestions soon.Amber Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
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