Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Anyway, do you all believe that the > enzymes help fight the yeast? Yes. I just read the article that was > posted last week, and I want to resume the enzymes. I don't know > which one to start with -- the Peptizide? When we were using Sporanox for yeast, I mixed in a little peptizyde with each dose. I believe the theory is that the proteases help break down the yeast's hard protein shell. I figured then the med. could get in there and do its thing - eradicate yeast. Seems to have worked well, as when we checked ds stool after two rounds of Sporanox, no yeast was found. The dr. was actually surprised it had worked so well. HTH. God Bless, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Sally, please tell me about Sporanox etc and where it can be purchased and how much - all the details please!!!!!!!!!!!!!!!!!!!!!!! Cheers H [ ] Re: Hi, I'm new Anyway, do you all believe that the > enzymes help fight the yeast? Yes. I just read the article that was > posted last week, and I want to resume the enzymes. I don't know > which one to start with -- the Peptizide? When we were using Sporanox for yeast, I mixed in a little peptizyde with each dose. I believe the theory is that the proteases help break down the yeast's hard protein shell. I figured then the med. could get in there and do its thing - eradicate yeast. Seems to have worked well, as when we checked ds stool after two rounds of Sporanox, no yeast was found. The dr. was actually surprised it had worked so well. HTH. God Bless, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Sally -- Thanks for the advice. How much of the Peptizide did you mix with each dose of the Sporanox? Just a sprinkle? 1/4 of a capsule? More? Do you think it will work with Nystatin? Does oyur son still have to take the Sporanox or are you all completely finished? We are so frustrated about this yeast problem -- we can't seem to get it under control. Thanks. Liz > Anyway, do you all believe that the > > enzymes help fight the yeast? > > > Yes. > > > I just read the article that was > > posted last week, and I want to resume the enzymes. I don't know > > which one to start with -- the Peptizide? > > > When we were using Sporanox for yeast, I mixed in a little peptizyde > with each dose. I believe the theory is that the proteases help > break down the yeast's hard protein shell. I figured then the med. > could get in there and do its thing - eradicate yeast. Seems to have > worked well, as when we checked ds stool after two rounds of > Sporanox, no yeast was found. The dr. was actually surprised it had > worked so well. > > HTH. > > God Bless, > > Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 > Sally, please tell me about Sporanox etc and where it can be purchased and how much - all the details please!!!!!!!!!!!!!!!!!!!!!!! > Cheers H Well, Unfortunately, it is an Rx. My ds had a stool analysis from Great Smokies and yeast showed up. (note: the Great Plains OAT done at the same time showed no yeast). Great Smokies said that no natural substance would kill Tom's particular strain of yeast - only Sporanox. It is truly nasty stuff, but that with the pep. did the job. We now give loads of probiotics to try and keep the yeast in check. I believe enzymes, yeast eradication, and CLO/Urecholine have been the three treatments that have *almost - but not quite* moved Tom from Aspergers to ADHD. We are getting ready to tackle the phenols this week and see Dr. Amy (chelation) in March. (probably way more than you wanted to know - LOL) God Bless, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 > Sally -- > > Thanks for the advice. How much of the Peptizide did you mix with > each dose of the Sporanox? Just a sprinkle? 1/4 of a capsule? I'd say about 1/4 capsule. Do you think it will work with Nystatin? I don't see why not. Are you quite sure the Nystatin kills your child's type of yeast. I have read that many strains are now resistant to Nystatin - but I still think the pep. could only help. Does oyur son still > have to take the Sporanox or are you all completely finished? We have been finished since the summer (I think he took it a total of 2 mo.) The first time he went off it, we had some regression/spaciness. Within a couple days of re-starting it with the pep., he was " with us " again. Then, when we were finished with that bottle, we had no regression (praise the Lord!). We still give *loads* of probiotics including Primal Defense, Pro-bio gold and some gfcfsf things I pick up at the HFS - I try to mix them up a bit. We are > so frustrated about this yeast problem -- we can't seem to get it > under control. Yes, it is incredibly frustrating. I pray you see success soon. God Bless, Sally > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Sally thank you - what is Sporanox is it from a Health food or a prescription etc. Cheers H [ ] Re: Hi, I'm new > Sally, please tell me about Sporanox etc and where it can be purchased and how much - all the details please!!!!!!!!!!!!!!!!!!!!!!! > Cheers H Well, Unfortunately, it is an Rx. My ds had a stool analysis from Great Smokies and yeast showed up. (note: the Great Plains OAT done at the same time showed no yeast). Great Smokies said that no natural substance would kill Tom's particular strain of yeast - only Sporanox. It is truly nasty stuff, but that with the pep. did the job. We now give loads of probiotics to try and keep the yeast in check. I believe enzymes, yeast eradication, and CLO/Urecholine have been the three treatments that have *almost - but not quite* moved Tom from Aspergers to ADHD. We are getting ready to tackle the phenols this week and see Dr. Amy (chelation) in March. (probably way more than you wanted to know - LOL) God Bless, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Sporanox is a prescription. Rx = prescription. Good luck and God bless, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 My daughter got her first helmet at 6 months, and it has never really bothered her, except she doesn't like when I first put it on. Welcome! The folks here are great! A lot of good info and encouragement here! Caro, Mom to Baby Mo, 8 1/2 months old now, 1st DOCBanded 5/23/03, 2nd DOCBanded 7/30/03, Dallas, TX area --- In Plagiocephaly , " avid_gal " <avid_gal@y...> wrote: > Rhonda, Collin's mom suggested I come here, so hello! My 5 month > old girl just got her helmet this week, and though it's getting > better, I can tell she hates it. How long did it take your > children to adjust? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Hi and welcome! Most children adjust remarkably fast to their new bands, but some do take a bit longer than others, esp. at bedtime. Is she crying a lot? Sorry she's not taking to it so well I'm sure it's very frustrating & stressful. Good luck! Debbie Abby's mom DOCGradavid_gal <avid_gal@...> wrote: Rhonda, Collin's mom suggested I come here, so hello! My 5 month old girl just got her helmet this week, and though it's getting better, I can tell she hates it. How long did it take your children to adjust?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Hi, Welcome to the group. How long has your baby been in her band? Most babies adjust very well to their bands. I'm sorry to hear that your baby isn't. My baby was older when she was banded and adjusted great. Hopefully she'll start to adjust soon. Keep us posted. --- In Plagiocephaly , " avid_gal " <avid_gal@y...> wrote: > Rhonda, Collin's mom suggested I come here, so hello! My 5 month > old girl just got her helmet this week, and though it's getting > better, I can tell she hates it. How long did it take your > children to adjust? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Welcome to the group. It can take a baby a little bit of time to adjust, but usually they adjust very quickly. My son was banded at 5 months and it took him two nights to get use to his band. Otherwise, when we took his band off for a bath, he would look for his band to be put on. Good luck. Please let us know how things are going. Take care, Randi mom to Drew 8 months DOC grad 7/21/2003 --- In Plagiocephaly , " avid_gal " <avid_gal@y...> wrote: > Rhonda, Collin's mom suggested I come here, so hello! My 5 month > old girl just got her helmet this week, and though it's getting > better, I can tell she hates it. How long did it take your > children to adjust? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Hi, How are things going? Any better? Please keep us posted, Rhonda Mom to Collin -- In Plagiocephaly , " stripes6060 " <taime@o...> wrote: > Hi, > Welcome to the group. How long has your baby been in her band? Most > babies adjust very well to their bands. I'm sorry to hear that your > baby isn't. My baby was older when she was banded and adjusted great. > Hopefully she'll start to adjust soon. > Keep us posted. > > > > Rhonda, Collin's mom suggested I come here, so hello! My 5 month > > old girl just got her helmet this week, and though it's getting > > better, I can tell she hates it. How long did it take your > > children to adjust? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Hi, Welcome to the group. My baby HATED hats but adjusted very well to her band. It's not like a hat and most babies adjust well. I think you might be pleasantly surprised! The younger a baby is banded the better and faster the correction. It would be pretty hard to project how long your baby will have to be banded. It depends on growth too. Time is of the essence here, so you really need to step things up. It usually takes weeks to get in to see a specialist and then it usually takes 2 weeks to receive the band after the casting. You really don't need to dread this, it's not a bad thing. It doesn't hurt our babies and they really do adjust well to being banded. Keep us posted. --- In Plagiocephaly , " shygal514 " <shygal514@n...> wrote: > I have read alot of your postings and it seems like the helmet is the > right thing to do. Every since she was 2 months my doctor and told me > that if my daughters head didn't start to shape out that she would > need a helment. It's not quite as flat as it was, but it's still > pretty bad when you look down on the top of her head. > > She's nine months now and I take her to the pediatrician August 14th. > I know they will go ahead and set up a consultation for me to take her > and get her fitted for one. They mentioned it on her last trip to the > doctor. I have been putting it off because it's so hot this summer > and I don't want her uncomfortable. She seems to be hot natured > anyway. > > Can someone let me know how long she would probably have to wear it. > She hates having anything on her head and I know she won't like it at > all. I dread having to do this to her. She used to love to sleep on > her back and if you laid her on her side she would roll right back > over on her back. I finally got her off sleeping on her back, but it > doesn't help any. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Hi & welcome to our group:Just how long a child will be banded for varies from each child to child. Treatment time mainly depends on 1) Child's age, the younger you get the child banded, the faster the correction will be. Esp. under age 6 mos.....at your daughters age of 9 mos though she's still plenty young! 2) Plagio severity, obviously the more severe the plagio is, the longer time it'll take to correct 3) Growth spurts - the bands/helmets depend on growth spurts of the child for correction. Do you know what type of helmet or band your daughter will be referred for? There are STARbands, DOCbands (only available thru a Cranial Technologies) or Locally made helmets. Your daughter will adjust just fine to her new band. It's very uncommon for children not to tolerate em. I was shocked when we Abby's band on her head, she truly couldn't have cared less! She slept fine, ate fine, was her happy little self. Good luck w/this!! Debbie Abby's mom DOCGradshygal514 <shygal514@...> wrote: I have read alot of your postings and it seems like the helmet is theright thing to do. Every since she was 2 months my doctor and told methat if my daughters head didn't start to shape out that she wouldneed a helment. It's not quite as flat as it was, but it's stillpretty bad when you look down on the top of her head. She's nine months now and I take her to the pediatrician August 14th.I know they will go ahead and set up a consultation for me to take herand get her fitted for one. They mentioned it on her last trip to thedoctor. I have been putting it off because it's so hot this summerand I don't want her uncomfortable. She seems to be hot naturedanyway. Can someone let me know how long she would probably have to wear it. She hates having anything on her head and I know she won't like it atall. I dread having to do this to her. She used to love to sleep onher back and if you laid her on her side she would roll right backover on her back. I finally got her off sleeping on her back, but itdoesn't help any.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 Welcome to the group!! You are in a good place for support and encouragement!! Trying to pin down length of treatment is like trying to pin down what day is my child going to walk for the first time. There are so many different factors that fall into it! Although you are on to something - it would be a lot easier if you knew exactly how long before the whole process started...believe it or not...the time really does go by quickly... If you know that the banding is what you are going to do, is there any way they would move your appointment to earlier...just to give you a jump start - the more growth spurts you can take advantage of the better. Fill us in when you have your appointment and keep us posted on yours and your daughter's progress!! Mom to Noah - DOCBand grad 7/28/03 Atlanta, GA --- In Plagiocephaly , " shygal514 " <shygal514@n...> wrote: > I have read alot of your postings and it seems like the helmet is the > right thing to do. Every since she was 2 months my doctor and told me > that if my daughters head didn't start to shape out that she would > need a helment. It's not quite as flat as it was, but it's still > pretty bad when you look down on the top of her head. > > She's nine months now and I take her to the pediatrician August 14th. > I know they will go ahead and set up a consultation for me to take her > and get her fitted for one. They mentioned it on her last trip to the > doctor. I have been putting it off because it's so hot this summer > and I don't want her uncomfortable. She seems to be hot natured > anyway. > > Can someone let me know how long she would probably have to wear it. > She hates having anything on her head and I know she won't like it at > all. I dread having to do this to her. She used to love to sleep on > her back and if you laid her on her side she would roll right back > over on her back. I finally got her off sleeping on her back, but it > doesn't help any. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2003 Report Share Posted August 3, 2003 Welcome to the group. The length a baby has to wear their band or helmet depends on the severity of the plagio and their growth. Jenna was banded at 9 months and wore her band for 12 weeks. She was high moderate to severe. They estimated dhe received 80% correction. Please kepp us posted on your daughter. This group is very supportive. Angie and Jenna(STARband grad 1/21/03) Hi, I'm new I have read alot of your postings and it seems like the helmet is theright thing to do. Every since she was 2 months my doctor and told methat if my daughters head didn't start to shape out that she wouldneed a helment. It's not quite as flat as it was, but it's stillpretty bad when you look down on the top of her head. She's nine months now and I take her to the pediatrician August 14th.I know they will go ahead and set up a consultation for me to take herand get her fitted for one. They mentioned it on her last trip to thedoctor. I have been putting it off because it's so hot this summerand I don't want her uncomfortable. She seems to be hot naturedanyway. Can someone let me know how long she would probably have to wear it. She hates having anything on her head and I know she won't like it atall. I dread having to do this to her. She used to love to sleep onher back and if you laid her on her side she would roll right backover on her back. I finally got her off sleeping on her back, but itdoesn't help any.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 Hi Randi!!! I just wanted to welcome you to the group. How is your baby girl doing in her band now? Better I hope. Dustie, mom to , DOC Grad '03 --- In Plagiocephaly , " avid_gal " <avid_gal@y...> wrote: > Rhonda, Collin's mom suggested I come here, so hello! My 5 month > old girl just got her helmet this week, and though it's getting > better, I can tell she hates it. How long did it take your > children to adjust? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 hi and welcome to the group!! I just wanted to second everything Debbie gave you and wish you luck. Please keep us updated on your little one. Dustie, mom to , DOC Grad '03 --- In Plagiocephaly , " shygal514 " <shygal514@n...> wrote: > I have read alot of your postings and it seems like the helmet is the > right thing to do. Every since she was 2 months my doctor and told me > that if my daughters head didn't start to shape out that she would > need a helment. It's not quite as flat as it was, but it's still > pretty bad when you look down on the top of her head. > > She's nine months now and I take her to the pediatrician August 14th. > I know they will go ahead and set up a consultation for me to take her > and get her fitted for one. They mentioned it on her last trip to the > doctor. I have been putting it off because it's so hot this summer > and I don't want her uncomfortable. She seems to be hot natured > anyway. > > Can someone let me know how long she would probably have to wear it. > She hates having anything on her head and I know she won't like it at > all. I dread having to do this to her. She used to love to sleep on > her back and if you laid her on her side she would roll right back > over on her back. I finally got her off sleeping on her back, but it > doesn't help any. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 I also have RA although I don't know a lot about it. I also have osteo, so I don't know which is causing which joint to ache. I took Enbrel for a while, it is suppose to slow the progress of RA. I stopped because I had skin problems from it. Right now I am debating about a new rheumatologist. It seems all they can do is give med. There seems to be some good info about meds in this chat. I know RA is scary, life is scary. Its one day at a time, that is really all we have, who knows about tomorrow? lsykeswvu <lsykes@...> wrote: Hi, I was just diagnosed with RA last week. I am very scared and confused at this point. I go back to the doctor to discuss treatment options soon. I am still in the feel sorry for myself and denial stage, but I'm sure I will get past this feeling. I am thirty years old and just got married last month. I thought planning a wedding was stressful and know I can see I have much more serious and real problems ahead of me. I have been taking pain medicine which helps, but does not make me feel 100%. This disease is strange. I can't believe I feel healthy my whole life and just wake up with a sore joint in two fingers one day. I just thought I had slept on it, but soon knew I had a serious problem when I couldn't extend my arm all the way. A year later I couldn't pull my body out of bed or lift my arms to do my hair or put a shirt on. This is when I started on the medication. I spent last evening crying. I don't know anyone with RA and would love someone to talk to or give any advice. Thanks a lot, Lisie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Hello Lisie! I know where your coming from. I was just diagnosed last week also. One day my hands and feet were fine, and the next day they were swollen up like balloons. My fingers and wrists were extremely stiff and painful in the morning, and by afternoon some of the stiffness and pain had diminished some. You could have knocked me over with a feather when my doc said it was RA. I am already taking pain meds for chronic back problems, but for some reason they don't help my joint pain too much. Heat and ICYHOT helps the most. My feet and hands are back to normal size as of yesterday, but I still have extreme pain in my right thumb and wrist. I hope this will start to diminish too. I am 41 years old but feel 61 LOL. I am also Mom to 2 year old twins, and some mornings it is sooooo hard to get up and get the day going. There are times I get very depressed because I want to go places with my babies and experience fun things with them, but most days it is very difficult just to get them dressed in the morning. Thank God for a supportive husband, even tho he doesn't understand alot of whats going on with me. I wish I had some advice to give, but I guess we will learn together. This is a great place to be. Hugs C -- [ ] Hi, I'm new Hi, I was just diagnosed with RA last week. I am very scared and confused at this point. I go back to the doctor to discuss treatment options soon. I am still in the feel sorry for myself and denial stage, but I'm sure I will get past this feeling. I am thirty years old and just got married last month. I thought planning a wedding was stressful and know I can see I have much more serious and real problems ahead of me. I have been taking pain medicine which helps, but does not make me feel 100%. This disease is strange. I can't believe I feel healthy my whole life and just wake up with a sore joint in two fingers one day. I just thought I had slept on it, but soon knew I had a serious problem when I couldn't extend my arm all the way. A year later I couldn't pull my body out of bed or lift my arms to do my hair or put a shirt on. This is when I started on the medication. I spent last evening crying. I don't know anyone with RA and would love someone to talk to or give any advice. Thanks a lot, Lisie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Hi Lisie - I understand being scared and confused - I remember when I was first diagnosed and I know that most on this list probably went through the same feelings. It's hard to accept the thought that the disease you have is something that can completely debilitate your life, and that there is not really anything out there that " cures " it. There's a certain amount of grieving we do - grieving at the loss of the style of life we once had. However, don't give up all hope! I strongly recommend that you do a lot of research at this point and really look into the treatment options. This is the time to decide that YOU are the best one to assess what's going on with your body, and the doctor should be your educated assistant. You're young and have a long life in front of you, so you want to look at long-term results and not just what's going to temporarily fix the problem now. There are options out there that have had good results with a large number of people. Personally I'm a strong believer in the use of antibiotics to fight RA, and there are many people who have used the antibiotic protocol successfully and have obtained remission for years while remaining on nothing but an every-other-day dose of antibiotics. It's not the quickest way to relieve your pain, but I think anyone that is looking at 20, 30, 40 years or so of treatment should focus on the long-range goals and not just immediate relief. When you go in to see your doctor, take in print-outs of various treatments. Look up the typical drugs: methotrexate, plaquenil, prednisone, enbrel etc. Know the potential side effects. Also look up the use of antibiotics with RA (minocin/minocycline and doxycycline). Look up the various pain meds (ibuprofen, acetaminophen, celebrex, oxycodone). Know the pros and cons of each treatment. Think of your life and your goals and what you want long-term. And when you go in, let your doctor know what your thoughts are on it all. The doctor should be your coach in this, but your treatment is YOUR choice. I was diagnosed with RA almost seven months ago. I chose to use the antibiotic protocol, but I've also added in some other meds for various reasons. I use prednisone (very small dose, every other day) to help reduce the inflammation in the joints so that the antibiotics can work. I use plaquenil (for now, this is temporary) to help retard any joint damage while the antibiotics work. I also use various pain meds as needed - I used quite a bit of oxycodone when I was flaring badly, but rarely need anything other than a bit of Advil these days. It was not easy at first, because it's typical to run into increased problems as the bacteria in the joints starts to die off. But I am active and busy these days, working at a fishing lodge and training and showing my dogs. I still hurt, and there are days when my fingers won't bend all the way and my knees, ankles and shoulders are sore. But I CAN function, and I feel that my treatment (MY choice of treatment) is something that will work long-term with a reduction in meds instead of the typical increase you see when using the other drugs. There IS life with RA - it's a matter of finding the treatment that will work best for you. Don't just blindly follow your doctor's recommendations. Some doctors are sadly lacking in current information and only want to prescribe the typical drugs. Be proactive in your treatment and you will be very glad down the road! Good luck, and keep us posted as to how things are going. in Alaska ----- Original Message ----- From: lsykeswvu Hi, I was just diagnosed with RA last week. I am very scared and confused at this point. I go back to the doctor to discuss treatment options soon. I am still in the feel sorry for myself and denial stage, but I'm sure I will get past this feeling. I am thirty years old and just got married last month. I thought planning a wedding was stressful and know I can see I have much more serious and real problems ahead of me. I have been taking pain medicine which helps, but does not make me feel 100%. This disease is strange. I can't believe I feel healthy my whole life and just wake up with a sore joint in two fingers one day. I just thought I had slept on it, but soon knew I had a serious problem when I couldn't extend my arm all the way. A year later I couldn't pull my body out of bed or lift my arms to do my hair or put a shirt on. This is when I started on the medication. I spent last evening crying. I don't know anyone with RA and would love someone to talk to or give any advice. Thanks a lot, Lisie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 , I am not sure if it would help you and you may need to talk to your Dr. I also have DJD And have had a spinal fusion. When I get spasms in my back I have been using the patches that you by the say they last 8 hours but for me 4 would be nore like it. They are sold eveywhere. Welcome to the group and I hope it works for you. It may relax the back enough to stop the shoting pains. Heidi On 5/11/07, Marsha Hostetler <marshahostetler@...> wrote: > > Hello , > I am sorry you have to be here but glad you found us. I have no > suggestions on your back but there are many that will be able to. Just > wanted to Welcome!! > > Marsha > > > [ ] Hi, I'm new > > Hello, > I am a new member of this group. I have not been completely diagnosed with > RA, but am diagnosed with Pindalderomic Rheumatoid for now. I have an > appointment with the Rheumatologist next month, so all this is new for me. I > am 34 and my joints seem to be getting worse. One area that it affects more > than others is a joint in my back where I have a hemi-vertabrae with > scoloiosis. When I get a flare up, the pressure in that area shoots pain and > burning down my legs. Standing for more than 5 minutes is unbearable. Does > anyone have suggestions on relief when this happens? I hate missing work, > but think pushing it and going to work will aggravate it more. My > neurologist has increased the neurontin, but hasn't helped this morning. > Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 Hey , Welcome. I beleive the most frustrating process of RA or any other immune disorder is the initial diagnosis period. The only advice I can give is for you to push for answers and options that will allow you to receive the best possible treatment at the earliest possible date. In looking back I was too pasive I allowed the diagnosis phase to drag on for too long.That is the one thing I would cahnge, the old " Well not sure what it is yet, I will see you in a couple of months and see how you feel. " I think doctor's need reminders that you are a person and you are in pain and your life is effected in the following ways and the current meds are not working what are you going to do for me NOW!I forced myself to become more outspoken, I even give myself a pep talk before visits what issues I need resolved and I am not leaving the office without a clear plan in place. Jim welcome and I wish you all of the best let your doctor know your meds are not cutting it and ask for a new plan. Laurie -- In , Doster <jamiedatlanta@...> wrote: > > Hello, > I am a new member of this group. I have not been completely diagnosed with RA, but am diagnosed with Pindalderomic Rheumatoid for now. I have an appointment with the Rheumatologist next month, so all this is new for me. I am 34 and my joints seem to be getting worse. One area that it affects more than others is a joint in my back where I have a hemi-vertabrae with scoloiosis. When I get a flare up, the pressure in that area shoots pain and burning down my legs. Standing for more than 5 minutes is unbearable. Does anyone have suggestions on relief when this happens? I hate missing work, but think pushing it and going to work will aggravate it more. My neurologist has increased the neurontin, but hasn't helped this morning. > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Hello everyone, I recently signed up and not sure what to post, but the beginning is the best place to start I suppose. So basically, I was diagnosed hashimoto's hypothyroid in 1997, had my ups and downs with it. Now am always just looking for more information how to get a handle over it. Anyway, thats all I can think of now. I read a few posts here and it sounds great. Inflammation causes so many problems, diseases, even headaches. ~ Priitaa Hypothyroid Vegetarians: HypothyroidVegetarians Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Welcome, and I hope you will find help here. Most of us come from a history of being diagnosed with chronic fatigue syndrome only to find that we have several infections going on causing the symptoms. A lot of us are hypothyroid including myself. Are you well on thyroid treatments? a Carnes > > Hello everyone, > > I recently signed up and not sure what to post, but the beginning is > the best place to start I suppose. So basically, I was diagnosed > hashimoto's hypothyroid in 1997, had my ups and downs with it. Now am > always just looking for more information how to get a handle over it. > Anyway, thats all I can think of now. I read a few posts here and it > sounds great. Inflammation causes so many problems, diseases, even > headaches. > > ~ Priitaa > Hypothyroid Vegetarians: > HypothyroidVegetarians > Quote Link to comment Share on other sites More sharing options...
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