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    Old 12-23-2008, 09:15 PM   #16
    tigerlily11
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    Re: RSD so many questions

    Hi Gaollan,
    You have so much information!! It is so helpful that you share it with the board!
    Is the RSD burn caused by the nerve endings and are they randomly stimulated or is it caused by the sympathetic nerve wreaking havoc with sensory nerves? I am trying to understand the physiology of the burn. Also, it migrates, sometimes in the foot, then in the leg and thigh, then in the other leg, and on the face or in the mouth....and the intensity varies from mild to unbearable..and then the swelling...also so random!! All I want for Christmas is REMISSION!!!


    Berdiejoy,
    I am so sorry you are going through such a painful experience!! What kind of rehab is it that you are going through? I don't understand how they can run things over your foot and cause you all that agony! Please check with your doctor to see if what they are doing is appropriate!!! Please be sure you are getting the best reatment for yourself..Take care of yourself and be sure you are in the right situation for what you need...
    Take good care..

     
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    Old 12-24-2008, 12:14 AM   #17
    Gaollan
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    Re: RSD so many questions

    I'm a walking encyclopedia! ROFL I feel that way at times because I'm one of those people....and you sound like one too.....that just has to find out the why of everything and will research something just for the heck of it. I know when I first started out with rsd all I wanted was to understand why. So, I read those boring, dry medical articles and whatever else I can get my eyes on and break it down into plain english if I can. I want everyone to understand because I find it helps with adjusting to it all.

    As to the burning we feel, it's the sympathetic nervous system. Every nerve in our bodies are misfiring and damaged. It's the same reason why we are so sensitive to touch and air. Everything is so over stimulated and in a state of high alert and this causes our bodies to perceive a stimulus as painful when it shouldn't be. We have serious sensory overload. It's the damage to the nerves more than anything that produces that burning sensation.

    If you stop to think about the burning, have you ever noticed that the burn happens more when your pain level is higher? Had site specific burning where you felt a lot of pain at? I'm not saying that it's that way every time, but there's usually a pattern to things if you stop and think carefully or document what you feel so you can see the pattern.

    Most don't know that after having rsd for 6 months, nerve endings become damaged permanently. Hence, the longer you have it the more damaged endings which in turn help absolutely nothing! LOL I think this is a big reason why it becomes difficult, if not impossible, to put it into remission or have any treatment that works, like blocks. Sometimes blocks don't work because the pain has already gone independent. I believe, in my case, it went that way pretty fast. I had uncontrolled pain due to no pain meds, which I think also helped it to spread so fast in me, so with everything raging inside me, my system went into overload quickly and didn't stay sympathetically maintained more than the first few months. Of course I can't "prove" it but I don't see any other explanation for it!

    Did I explain well? LOL Sometimes I'm not so sure if I do or not.

    Hugs,

    Karen

    Last edited by Gaollan; 12-24-2008 at 12:24 AM.

     
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    Old 12-24-2008, 07:28 AM   #18
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    Re: RSD so many questions

    Hi Tiger Lily,
    It is a rehab center in North Carolina. They pretty much have a thing with workers comp to make sure you are able to go back to work. it is called the rehab center. Their goal is to get me to only 10% disability to go back to work.
    I want to go back to work but now that dr is putting me in wheele chair. that is why i was sent home. they have made me a shoe but this will not be in until the 19th of Jan. I have been in a boot and on crutches since feb 08. I guess i am just discourage. when i go this center i am not allowed to come home on the weekend so that makes it even harder. but we are tough and i will be ok. thank you for responding , was just wondering if anyone else had to go to rehab like this?
    bj

    Last edited by berdiejoy32; 12-24-2008 at 07:36 AM.

     
    Old 12-25-2008, 05:38 PM   #19
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    Re: RSD so many questions

    If you can find a warm therapy pool do it. I also believe that is the only thing that has help my foot. Not only the fracture but the RSD. At first the water hitting the skin on the foot hurt, but as time moved on it is better and now only slightly painful. I do have swelling after my 1hr session of walking and moving in the pool but will go away in a couple of hours if I don't wear a shoe and keep it elevated. I go 3 times a week. I found I got to lose a little weight in the process. I also agree that not everyone gets the discoloration, I didn't and my doc is second guessing my foot. Its rsd how I wish it wasn't. Has any one tried any treatments that don't include drugs and did they work? I am taking oxycontin and afraid of becoming addicted to it. The Lidoderm patch helps a little but not the deep pain or burning even the oxy dosen't cut that.
    Hope everyone is having a happy holiday.

     
    Old 12-25-2008, 07:38 PM   #20
    Gaollan
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    Re: RSD so many questions

    I know "addiction" is a fear of a lot of people in the early time with rsd,but it shouldn't even enter your mind. We take them to help with the horrible pain of rsd and as long as that pain is there you won't become addicted. There's no way. Your body will become dependent which is totally different. After taking any drug for awhile, you have to taper off it, that goes for all classes of drugs, not just pain meds. The others, anti-depressants, lyrica,cymbalta,neurontin.....none of these can be quit cold turkey if you've been taking them for a long time. Addiction isn't a word that can be used in conjunction with us. So, please don't worry about addiction.

    Have you tried lyrica or one of the other meds? They're supposed to help with the burning because that class of drugs works on the nerves which is where the burning originates.

    Pool therapy I agree is awesome. I wouldn't have walked on my own again if not for that. I thankfully, back then, didn't have touch sensitivity so it was probably easier for me but it got me on my own 2 feet again even though I hurt more after. It's usually like that though when we deal with doing anything at all, not just pt.

    Hugs,

    Karen

     
    Old 12-26-2008, 07:19 AM   #21
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    Re: RSD so many questions

    Hi there Tiger Lily;
    just recently my pain management dr. is sending to a "Comprehensive Pain Management Consult" at Cleveland Clinic as the neurostimulator he put in doesn't go any further than the top of my right shoulder and not down to my elbow where the horrible burning and pain originated...not looking forward to this; Cleveland is 2 1/2 hrs. from my home, car 11 yrs. old; family working - can't help much let alone temp total may end abruptly as of course another comp dr. visit is scheduled soon. just wish i could stand pain and just go back to work. and reading this about you is making me wish that much harder, i feel for you and can understand your frustration. wish you luck...i know i'm gonna need it, may end up homeless all too soon. take good care. scioladyohio.

     
    Old 12-26-2008, 08:01 AM   #22
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    Re: RSD so many questions

    hi walleye,i just had a couple questions for you since i too live in MN. just who have you been seeing so far for treatment/surgery,and do you happen to live near the metro area? i live in the so metro. who is doing your pain management right now? who is your surgeon? i do have some great recommendations for these docs if you need some. i have had the fortune of getting some really great surgeons and other specialists but also some real idiots too.

    i use the lido patchces too but there is also a lido ointment? that is the same 5% as the patch but not quite as good as the patch since the patch kind of "holds' the lido over one spot? but the ointment can work great for larger areas or areas like in the hairline or betwen toes ,basically any areas where the patches wont fit well. i also started using this other ointment called prudoxin cream? i was in the rehab facility(bethesda in st paul) i was transferred to after my spinal cord surgery done at the U of MN caused my damage(this surgery is when my SNS was also damaged which fired off my RSD a few months later). the physiatrist in charge of my care was the one who started me with the prudoxin cream. it does help with the hotter spots of buirning pain. this was actually rxed for my central pain syndrome(which has some of the very same components as RSD but just affects skin surface with burn/sting crap) but this does work well for some of my RSD hot spots too.

    one other thing that has worked amazingly well for the RSD flares,when that horrid burning just gets crazy on me is the TENS unit. as long as i can get that current to pass thru the knee where my RSD is,i can usually meet that burning with the signal then pop it up one notch above it and it in most cases,will kind of override it and at least make it more tolerable to live with,at least til it calms down some. one really insane thing with my RSD that actually runs from just above my knee on down thru the bottom of my foot is my knee loves cold and it makes the pain more bearable(i know about the contraindications,but only use this as a last resort at times)but when i get down to the foot itself,cold will create one hell of a nasty pain reaction(just lovely living here in the frozen tundra of the north right?). my foot loves heat. this is just really crazy to have all in one affected area. don;t quite understand that one. but with this condition,there IS ALOT of insanity here anyways.

    one thing i have foud,since the RSD itself is usually originally triggered by some level of sympathetic nervous system damage,anything that the SNS actually governs,like hair and nail growth,or the fight or flight response all can get pretty screwed up too. my body has been stuck in that fight or flight mode since the day of my surgery and the damage,and it has affected my spasticity and metabolism too to the point where even my weight is just continued to drop becasue my metabolism from that For F response makes your body 'speed up"? and my hair is also falling out all over the place. if you actually look up everything that the SNS really governs in our bodies,you would see a pretty long list of things that can become affected.

    one REALLY insane thing i have where i just have heavy sympathtic damage that crosses my face up to my left eye(i also have horners syndrome too) any dental work i have had done,even just a simple drill and fill can casue a major spontaneously created pain syndrome,all by itself. it just shows up out of nowhwhere. this has nothing to do with my actual RSD that is like i said,only in the right knee on down. just in that one area from my spinal cord damage level(C 7-T1) on up to that horners eye. very very insane stuff there. nothing in my body is just normal anymore,nothing. luckily i have had great docs and specialists who Dxed this pretty early in me.

    one thing i did find is that even this far out after my Dx(it all occured in 2003) i still had a good response from a sympathetic nerve block done in my lumbar area during the summer. it brought down my hellish burning that had just really gotten out of control for about two months so we decided to try it again and it did help. wasn't too certain this far out if it would actually do anything for my RSD,but it did. i personally do think there is still some value in still getting an occasional symp block no matter how far along your process is. it sure did make a difference for me. you just never really know for certain what will or wont work with any real condition til you at least give it a shot or two,depending. i have tried many many different types of meds for my RSD and central but unfortunetly even the ones that worked gave me such awful side effects i was pretty much non functional. thats the biggest reason i like my TENS and the lido and prudoxin,i don;t have to 'take it inside",ya know? just some stuff for ya to chew on. good luck walleye,marcia
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    Old 12-28-2008, 03:26 PM   #23
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    Re: RSD so many questions

    Marcia, Wow now thats some information. I have a Neuro at Fairview in Wyoming that is willing to help me with this. He is trying to keep my off the drugs that have heavy side effects. Lyrica, and Amptrimpline I have tried with good results but side effects made them unfriendly. So just the lidoderm patch and oxycotin when needed, which is about once a day when I can't stand the pain anymore.
    My foot surgeon is at Minnesota Sports Medicine in Burnsville or Edina. He is working more with the fracture that won't heal. Am still using a bone stimulator to get the bone to grow. I wonder if the rsd is playing a part in this not healing???? He is not the one that did my original surgery that caused the rsd in my left foot. But he is looking at reconstructing my foot so I can walk without pain. Not liking that one at all. Scared that the rsd will get worse!!!!!! I could have gone to the U for pain management but am not a city driver at all. If it becomes something I need to do then I'll find a way to get there. I do have a TENS unit but haven't tried it for the foot. I had one symapathic nerve block but the person giving it hit the spine which left me with 8 days in the hospital and the worst headache ever. Little afraid to have another one. I would go to a place that specializes in giving them using a fluorascope. Do you find pain management better than a doc that only knows a little about the disease?
    Deb

     
    Old 12-28-2008, 05:34 PM   #24
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    Re: RSD so many questions

    Quote:
    Originally Posted by Gaollan View Post
    I know "addiction" is a fear of a lot of people in the early time with rsd,but it shouldn't even enter your mind. We take them to help with the horrible pain of rsd and as long as that pain is there you won't become addicted. There's no way. Your body will become dependent which is totally different. After taking any drug for awhile, you have to taper off it, that goes for all classes of drugs, not just pain meds. The others, anti-depressants, lyrica,cymbalta,neurontin.....none of these can be quit cold turkey if you've been taking them for a long time. Addiction isn't a word that can be used in conjunction with us. So, please don't worry about addiction.

    Have you tried lyrica or one of the other meds? They're supposed to help with the burning because that class of drugs works on the nerves which is where the burning originates.

    Pool therapy I agree is awesome. I wouldn't have walked on my own again if not for that. I thankfully, back then, didn't have touch sensitivity so it was probably easier for me but it got me on my own 2 feet again even though I hurt more after. It's usually like that though when we deal with doing anything at all, not just pt.

    Hugs,

    Karen
    Dear Gaollan and Karen,
    I am a first time user of this board, I was so excited to find it, especially since so many people have never even heard of RSD, yet know anything about this unfortunate disease. I wanted to write to both of you because I can relate to what you both had to say. Gaollan, my doctor wanted me to get the spinal cord stimulator also. I have had RSD for 13 years since my first knee surgery in 1996. I have had 6 more since then and therefore my RSD has been constantly acting up. I have a very uncommon bone disease where the blood in my left femur does not go to the bottom of my femur causing the bone to die and then break off like a twig. The surgeries i have had last for numerous hours, and I am cut from my thigh to my shin. Then the Dr. grafts bone from other parts of my leg to fill in the whole, it is quite extensive. I have had another piece of bone break off a year ago, but my Dr. said he can no longer graft anymore bone. He said I only have 2 choices, one is a risky experimental lenghty surgery, and the other is a total knee replacement. The only problem with the knee replacement is that because of this bone disease I have (osteochronditis desicans) the knee replacement will only last 2 to 3 years. Since I am only 48 years old I do not want to have to have a number of knee replacements. The bone pain I can handle most of the time but the RSD is the worst!!!
    Karen, you were so informative with your response to Gaollen and so kind and understanding I just wanted to let you know that.
    Gaollen, I have opted not to have the spinal cord stimulator, because of these other problems I have with my leg, but from what I have read they have ben quite successful. I have recently started taking lyrica and found that to help with the burning pain. I am also on the Duragesic patch, and cymbalta, I have found this combination to be working so far. The problem is my body builds up such a tolerance and then the meds don't seem to work as well. I also was on oxycontinin 80mg. 3 times a day with a number of other meds for many years. I stopped taking all the pills (17of them) one Dr. had me on 4 years ago, while I was working and raising 5 kids. I don't know how I did what I did all I know is that it was horrible commming off them as I flushed everything down the toilet one day and stoppped cold turkey. It was the most horrible experience I have ever had.
    Sorry if I for rambling on and on, but as i said this is my first posting!
    Thank you for your time and understanding!
    ALL MY BEST,
    MBO1221

     
    Old 12-28-2008, 07:57 PM   #25
    Gaollan
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    Re: RSD so many questions

    I wouldn't want to risk having a total knee replacement knowing I'd face it again in 2-3 years! To have a surgery, any surgery with rsd is seriously high risk and could cause spread as well as a huge flare up in pain overall. That is the problem with the SCS. I can literally count on one hand the number of people I've talked to the past years that had no spread from getting the SCS and that had it work effectively on the pain longer than 6 months to a year. This is one subject I get rather passionate about because I've seen so many go through with it only to suffer multiple surgeries because of leads displacing,infection,spread. I guess what it comes down to for me is trying to spare others from more pain. I also want to give everyone the straight facts, risks and all so they can at least make the most informed choice about what they ultimately do. Each person can decide for themselves what happens when it comes down to it.

    I'm so very glad you're still with us after going off all those meds like that! *hugs* Definitely not something anyone should ever do. Speaking of which i did read your other post and you mentioned your health, being run down, etc. The rsd, the pain does have an effect on our health overall. When you're constantly fighting pain you don't get the deep REM sleep where deep,restful sleep occurs. RSD can also affect our immune system and being run down also contributes to always being sick and catching every little thing that comes along. I've found that almost all of us are the A type personalities. The go get em, on the go, seriously active people who barely slowed down to sleep! LOL It's no wonder we resent the enforced inactivity and the pills.....oh my....I, like pretty much everyone else, barely took an aspirin for anything before. My opinion is I'll take what I have to to keep my pain down so I can have a life. I also know that taking the meds leads to tolerance and is our number 1 problem. As you said, it only leads to higher doses and more pills. With this crud we live with, there is no way to win and we can only try to do what's best for ourselves, take care of ourselves and I think most of all, be kind to and love ourselves. Oh....let's not forget, laugh!! Laugh a lot every day. My wicked sense of humor has saved me.

    How old are your kids? I have 4 myself. A son who is 20. He was just married to his soul mate back in May and is in Iraq right now. We all miss him so much and can't wait till he comes home again!

    My daughter is 19 and is currently 3 months pregnant with my first grandbaby!! I'm so excited that I can hardly wait for the next 6 months to fly by. I'm, of course, going to be there when the baby is born.

    My other son will be 18 this coming April and has a great future as an auto mechanic.

    My last, but not least, daughter will be 15 in Feb. She's a kick butt artist. LOL I can't believe how fast they grew up on me. I'm 39 now by the way and had my 1st at 18. lol I got it all over with early. Glad I did too!

    Ok.......sorry this got so long but welcome to our corner of the world. I look forward to "talking" to you more!

    Big Hugs,

    Karen

     
    Old 12-29-2008, 04:40 PM   #26
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    Smile Re: RSD so many questions

    Hi Karen,

    I just wanted to congratulate you on becoming a grandma soon. Have you decided what you want to be called...grandma, nana, etc? How exciting!! You sure are a young grandma. You're right...good thing you had your kids young...pre-RSD, huh? Anyway, congrats!!

    Sharon

     
    Old 12-29-2008, 07:21 PM   #27
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    Re: RSD so many questions

    Thanks Sharon! I think grandma is fine but I know ultimately it's up to the youngin'! LOL I called one of mine grandma and my mom's mom I called mee maw. My mom said when I tried to say grandma it didn't quite come out that way. lolololol Guess I called my dad's mom by the "proper" name later when I could talk better. ROFLMAO!!! I did the "pendulum" thing on her belly last Sunday and it said boy. Now, we wait for her next ultrasound, most likely at the end of January to see if it gets confirmed or blown out of the water. Both her and the daddy to be really want a little girl. I told her to prepare herself, both of them, for hearing it's a boy. I'm pretty sure he'll be Jesse Lee although it's not set in stone. If it does end up being a girl, she'll be Kylie Ann Marie. I gave my her,as my oldest daughter my middle name,Marie and she's keeping the tradition with her oldest, whether it's this one or a baby down the road.

    Hugs,

    Karen

     
    Old 12-30-2008, 04:39 PM   #28
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    Smile Re: RSD so many questions

    Hi Karen,

    I love all that tradition with the names...it means so much. My middle name is "Marie" too...although really, it's a confirmation name. My parents never gave me a middle name so that's what I use.

    Nice names they've picked. My friend had a little girl in March and her name is "Kylie."

    If you want, let us know when you find out...SO exciting. When my sister was pregnant with my nephew, I remember we were SO hoping it was a girl because my sister and I are so close and have such a great relationship and we wanted that for my niece who was 2 at the time her brother was born. We were so suprised when we found out he was a boy, but as with everything in life, it all worked out and we can't imagine life without little Connor .

    You might have said this already, but when is she due? I'm so excited for you. Do they live close to you?

    Happy New Year to you and everyone here .

    Sharon

     
    Old 12-30-2008, 09:10 PM   #29
    Gaollan
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    Re: RSD so many questions

    Quote:
    Originally Posted by sharon1030 View Post
    Hi Karen,

    I love all that tradition with the names...it means so much. My middle name is "Marie" too...although really, it's a confirmation name. My parents never gave me a middle name so that's what I use.

    Nice names they've picked. My friend had a little girl in March and her name is "Kylie."

    If you want, let us know when you find out...SO exciting. When my sister was pregnant with my nephew, I remember we were SO hoping it was a girl because my sister and I are so close and have such a great relationship and we wanted that for my niece who was 2 at the time her brother was born. We were so suprised when we found out he was a boy, but as with everything in life, it all worked out and we can't imagine life without little Connor .

    You might have said this already, but when is she due? I'm so excited for you. Do they live close to you?

    Happy New Year to you and everyone here .

    Sharon
    I'll definitely let you know when I find out for sure if it's a girl or boy. Connor...awesome name! If hubby and I had had one more baby and it had been a boy, his name would have been Ian Seamus Connor or Seamus Ian Connor. I'm part Irish if you can't tell. LOLOL Seamus is Irish for James which is hubby.

    She's due as of now July 7th. It was July 11th and I'm sure it'll change again with the next ultrasound. LOL They did that to me with my "baby" who's almost 15 now. They said she come March 15th, then it was March 9th, then March 5th, she was born February 27th. ROFL She showed them!! Heather lives about 15 minutes away from me right now and I'm trying to talk her into moving in with me. It'd be nice to have some help paying the bills. If nothing else, we've agreed she'll "move in" in the middle of June so when she goes into labor I can help her through it till it's time to go to hospital.

    Hugs,

    Karen

     
    Old 12-31-2008, 06:11 PM   #30
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    Smile Re: RSD so many questions

    Hi Karen,

    That would be great if they would live with you. You could all help each other out!

    Connor is named that because it's part of our last name (just add an O' to the beginning ). That's how my sister decided to carry on our name. His sister's name is Brenna. We're Irish too if you haven't noticed...100%. Their daddy is German. His name is James too. I love that you would have named a boy Seamus after daddy. I love when there's meaning to kids' names.

    Have a great 2009!

    Sharon

     
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