Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 I have spoken to my family Dr. & Rheumy.....both think I have it, but won't add it to my list of ailments, probably because no one really has me figured out yet. Every time I go to a new place I have a totally new work-up done (as I was recommended) but all that does is rule out tons of other diseases. All of my Dr's are 90% sure that I have Stills, but I have a few symptoms that don't line up, according to all of them. My personal feelings is that they are relying too much on textbooks to be honest, but if it isn't Stills, I certainly want to know what it is!!! Have a good one, Kirk. > > You might want to talk to your doctor about Fibromyalgia. There is no > clear test that I'm aware of, but my understanding and my diagnosis was > based on 18 trigger points that are on various parts of your body. If you > doctor checks those out, you might get that diagnosis. I developed Fibro at > the same time I was diagnosed with Still's. The doctor(s) told me I had two > different disorders, but it all came at once and all felt the same. It was > after Still's calmed down just a bit that the doctor did a really good exam > and explained the difference....one trigger point at a time. I too can no > longer stand for anyone to touch my back. Talk to you doc...you never know. > Best wishes, Kathi M > > In a message dated 3/26/2007 8:04:55 A.M. Eastern Standard Time, > kbonanny@... <kbonanny%40gmail.com> writes: > > Howdy all. I have a question I hope someone could shed some light on. I > used to love having massages/having my back rubbed. I can no longer > tolerate > the pain I get whenever anything touches my back for the last year or so. > Anyone ever hear of anything like this? Even a normal rub hurts so bad I > can't tolerate it. > Kirk > > I'm the exact same way. I have a new neighbor friend who's a toucher/light > > slapper when she talks and I'm going to have to say something to her cause > it > really hurts. And these are just very light touches. Al can't even give me > > back rubs anymore. I do not believe that I have fibro, I always thought I > was > more tender because of the steroids I've been on for what seems like > centuries. It seems to make everything more hyper-sensitive for me it > seems. > > Carole from Hollywood FL > > ************************************** AOL now offers free email to > everyone. > Find out more about what's free from AOL at http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 I think this is directed at me, so I will answer. First off are the headaches I get, the severity of them and the duration of them. I have had as long as 47 straight days with a blinding headache, and have spent the majority of my hospital time (25-28 weeks in under 3 years). I also have had from the start a bright red face. I had some rashes, but this is different and was there before meds. I also wound up with a ton of back problems, numerous " cracked " ???? discs, inability to stand (before the morphine pump implant) and such. I also have frequent diplopia (double vision), mainly with the headaches but quite a few times without. There are more, but I can't recall them all at this time. I also (this is as embarrassing as hell) turned into a bed wetter about 4 months after this started.... I hid it as long as I could.....every imaginable test was run and physically there is nothing wrong. I do have a lesion on my brain and they suspected MS, but thankfully there has been no progress to that diagnosis. I sometimes lose my balance for no apparent reason and my body doesn't respond well to meds. If you have any other related questions, please keep them off-list and email me at kbonanny@... just be sure to let me know you're from the stills group in the message or subject line. Adios, Kirk. > > What are you different ailment above and beyond the textbook ones? > > > > Ruedenauer2@... <Ruedenauer2%40aol.com> > > Searching: O'BRIEN, RUEDENAUER, JENNINGS, MUNGENAST, (P)FREUNDSCHUH, > EBERSOLE/EVERSOLE and misc spellings. Little information for MILLER, DAY, > MCCORD, > REININGER in Pa > > ************************************** AOL now offers free email to > everyone. > Find out more about what's free from AOL at http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 I think this is directed at me, so I will answer. First off are the headaches I get, the severity of them and the duration of them. I have had as long as 47 straight days with a blinding headache, and have spent the majority of my hospital time (25-28 weeks in under 3 years). I also have had from the start a bright red face. I had some rashes, but this is different and was there before meds. I also wound up with a ton of back problems, numerous " cracked " ???? discs, inability to stand (before the morphine pump implant) and such. I also have frequent diplopia (double vision), mainly with the headaches but quite a few times without. There are more, but I can't recall them all at this time. I also (this is as embarrassing as hell) turned into a bed wetter about 4 months after this started.... I hid it as long as I could.....every imaginable test was run and physically there is nothing wrong. I do have a lesion on my brain and they suspected MS, but thankfully there has been no progress to that diagnosis. I sometimes lose my balance for no apparent reason and my body doesn't respond well to meds. If you have any other related questions, please keep them off-list and email me at kbonanny@... just be sure to let me know you're from the stills group in the message or subject line. Adios, Kirk. > > What are you different ailment above and beyond the textbook ones? > > > > Ruedenauer2@... <Ruedenauer2%40aol.com> > > Searching: O'BRIEN, RUEDENAUER, JENNINGS, MUNGENAST, (P)FREUNDSCHUH, > EBERSOLE/EVERSOLE and misc spellings. Little information for MILLER, DAY, > MCCORD, > REININGER in Pa > > ************************************** AOL now offers free email to > everyone. > Find out more about what's free from AOL at http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 dear Sharon, Oooh, I get to play Ms. Social Security again.... OK. Contact your local social security rep/office (I think you have 60 days for appeals, unlimited time for payment plans) and tell them you want to file either a reconsideration (if you don't agree with the overpayment, for example they have incorrect info), or a request for a lower payment plan, or a waiver (yes, I agree I am overpaid but I cannot afford to pay back the money). Depending how much the overpayment is, and the cause, many times the rep will waive the overpayment. For the waiver or the payment plan, you will have to provide figures showing your income and the bills and why you feel you cannot pay back the overpayment, or want a lower payment plan. DO NOT TELL THEM YOU'RE GETTING MONEY FROM YOUR MOM!!! THAT'S CONSIDERED INCOME. Just make your numbers make some kind of sense if you can. But Sharon, BE NICE!!!!! The claims representative is generally the person making the decision. (Unless there is fraud involved or the amount is really really high or you have a history of overpayments for the same reasons). I remember back when I worked for SSA that I waived huge overpayments because the people were really nice and sorry about the overpayments. Unfortunately, I also denied them when people came in with attitudes and were incredibly arrogant, like it was their right to have a waiver. I know that sounds bad, but its really hard to do nice things for nasty people. Good luck Sharon. Carole from Hollywood FL In a message dated 4/8/2007 1:40:18 P.M. Eastern Daylight Time, sharon@... writes: I was wondering if any of you had medicare being paid for by the state and now they took it away? I was getting ssdi checks for 640 a month and now they are taking back 200.00 in back money and after that my check will be 500.00. I have also been paying for some of my meds w/ that money!!!! Does anyone have any suggestions? Has anyone had any luck contesting this? 640 was barely enough to pay bills and buy food !! I guess I should be thankfull, but I have had to get money from my Mom as it is was...Thank you Love Sharon xxoo ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 dear Sharon, Oooh, I get to play Ms. Social Security again.... OK. Contact your local social security rep/office (I think you have 60 days for appeals, unlimited time for payment plans) and tell them you want to file either a reconsideration (if you don't agree with the overpayment, for example they have incorrect info), or a request for a lower payment plan, or a waiver (yes, I agree I am overpaid but I cannot afford to pay back the money). Depending how much the overpayment is, and the cause, many times the rep will waive the overpayment. For the waiver or the payment plan, you will have to provide figures showing your income and the bills and why you feel you cannot pay back the overpayment, or want a lower payment plan. DO NOT TELL THEM YOU'RE GETTING MONEY FROM YOUR MOM!!! THAT'S CONSIDERED INCOME. Just make your numbers make some kind of sense if you can. But Sharon, BE NICE!!!!! The claims representative is generally the person making the decision. (Unless there is fraud involved or the amount is really really high or you have a history of overpayments for the same reasons). I remember back when I worked for SSA that I waived huge overpayments because the people were really nice and sorry about the overpayments. Unfortunately, I also denied them when people came in with attitudes and were incredibly arrogant, like it was their right to have a waiver. I know that sounds bad, but its really hard to do nice things for nasty people. Good luck Sharon. Carole from Hollywood FL In a message dated 4/8/2007 1:40:18 P.M. Eastern Daylight Time, sharon@... writes: I was wondering if any of you had medicare being paid for by the state and now they took it away? I was getting ssdi checks for 640 a month and now they are taking back 200.00 in back money and after that my check will be 500.00. I have also been paying for some of my meds w/ that money!!!! Does anyone have any suggestions? Has anyone had any luck contesting this? 640 was barely enough to pay bills and buy food !! I guess I should be thankfull, but I have had to get money from my Mom as it is was...Thank you Love Sharon xxoo ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 I have the wheezing, but no shortness of breath unless I am having an attack. Usually I get a lot of pain in my chest. I have a cough sometimes, not always though. But I noticed that I have a cough. I used to only cough when I was sick, now I do have a cough occasionally without any cold.Donna wrote: Does anyone have Asthma without the wheezing and shortness of breath. I have asthma that presents itself with a chronic cough. Just wondering if anyone else has this problem ...... or do most asthma sufferers have wheezing and shortness of breath. I would be very interested in hearing from anyone. I am new to the group. summertime331 No need to miss a message. Get email on-the-go with Yahoo! Mail for Mobile. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 My daughter is 5 and still not even close to potty training. She will not sit on the toilet...freaks her out. Question Do any of your children/teens have sensory issues, i.e. using the restroom? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Friends, does anybody know what is RITA 3CABG Tarvinder 76 --------------------------------- Explore your hobbies and interests. Click here to begin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Â in what context tarvinder? On Wed, 19 Sep 2007 tarvinder singh uberoi wrote : > > Friends, > > does anybody know what is RITA 3CABG > > > Tarvinder 76 > > >--------------------------------- > Explore your hobbies and interests. Click here to begin. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hi Donna, It's lyprinol http://www.lyprinol.com/home.htm and http://www.medicalnewstoday.com/articles/7372.php I recently read an article on it but have not tried it. I'm curious as I suffer from both chronic asthma and arthritis. > > Has anyone in the group heard of a new medication (not prescription) for treating arthritis ...... that has been rather successful in some people in the treatment of asthma? > > I did hear the name of the medication but I cannot remember it. > > Thanks > Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hi Donna, It's lyprinol http://www.lyprinol.com/home.htm and http://www.medicalnewstoday.com/articles/7372.php I recently read an article on it but have not tried it. I'm curious as I suffer from both chronic asthma and arthritis. > > Has anyone in the group heard of a new medication (not prescription) for treating arthritis ...... that has been rather successful in some people in the treatment of asthma? > > I did hear the name of the medication but I cannot remember it. > > Thanks > Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 OPPS, It did work. again, Sorry Re: Question > > >> Hi Donna, >> >> It's lyprinol http://www.lyprinol.com/home.htm and >> >> http://www.medicalnewstoday.com/articles/7372.php >> >> I recently read an article on it but have not tried it. I'm curious >> as I suffer from both chronic asthma and arthritis. >> >> >> >> >>> >>> Has anyone in the group heard of a new medication (not prescription) >> for treating arthritis ...... that has been rather successful in some >> people in the treatment of asthma? >>> >>> I did hear the name of the medication but I cannot remember it. >>> >>> Thanks >>> Donna >>> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 OPPS, It did work. again, Sorry Re: Question > > >> Hi Donna, >> >> It's lyprinol http://www.lyprinol.com/home.htm and >> >> http://www.medicalnewstoday.com/articles/7372.php >> >> I recently read an article on it but have not tried it. I'm curious >> as I suffer from both chronic asthma and arthritis. >> >> >> >> >>> >>> Has anyone in the group heard of a new medication (not prescription) >> for treating arthritis ...... that has been rather successful in some >> people in the treatment of asthma? >>> >>> I did hear the name of the medication but I cannot remember it. >>> >>> Thanks >>> Donna >>> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 , I just could not remember the name .... but that's it........Lyprinol. Thank you Donna Re: Question Hi Donna,It's lyprinol http://www.lyprinol.com/home.htm and http://www.medicalnewstoday.com/articles/7372.phpI recently read an article on it but have not tried it. I'm curiousas I suffer from both chronic asthma and arthritis.>> Has anyone in the group heard of a new medication (not prescription)for treating arthritis ...... that has been rather successful in somepeople in the treatment of asthma?> > I did hear the name of the medication but I cannot remember it.> > Thanks> Donna> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 , I just could not remember the name .... but that's it........Lyprinol. Thank you Donna Re: Question Hi Donna,It's lyprinol http://www.lyprinol.com/home.htm and http://www.medicalnewstoday.com/articles/7372.phpI recently read an article on it but have not tried it. I'm curiousas I suffer from both chronic asthma and arthritis.>> Has anyone in the group heard of a new medication (not prescription)for treating arthritis ...... that has been rather successful in somepeople in the treatment of asthma?> > I did hear the name of the medication but I cannot remember it.> > Thanks> Donna> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Both of those links worked for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Both of those links worked for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 > > Has anyone in the group heard of a new medication (not prescription) for treating arthritis ...... that has been rather successful in some people in the treatment of asthma? > > I did hear the name of the medication but I cannot remember it. > > Thanks > Donna I am Ravichandren from India(Tamilnadu).First,I don't know proper English.I discovered and giving one different type of herbal based (oral)treatment,freely to poor people,past 5 years on service basis.It cures all types of psoriasis,arthritis and some types of asthma,minimum 3 days treatment. In last 12 years back,I was attacked with Asthma.some years I have taked many treatments like aurveda ,Homeopathy and alopathy.But all are only controled,not curable.So i has read many herbal linked old books and cunsult many Tribs(who are lived in top of the hiils)for asthma.Then I research and discovered one different type of treatment,and I was taked.Only 3 days treatment Asthma totaly gone.So I I gived this treatment freely to many peoples.90% peoples are cured only 3 days treatment and some peoples are cured 6 to 10 days. Then Iwas gived this treatment to psoriasis patients and arthritis patients,kidney failier patients all are cured. So I think that and my experience ,one separate virus affects the human blood ,these diseases will be coming. This virus affects skin,skin will became hard and loses its elasticity and this virus affects Lungs,Lungs loses its elastisity and it functions are not normaly.So breething problems.This same problem to kidney.This treatment changes and cured this diseases minimum 3 days.So i think that this herbal treatment destroyed the separate virus? I don't know.But I was giving this treatment freely to poor people past 5 years.More details please visit our websit:www.curewithherbs.info or condact e-mail kamalisethu@... Thank you.This is not advertisement.Only on service basis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 > > Has anyone in the group heard of a new medication (not prescription) for treating arthritis ...... that has been rather successful in some people in the treatment of asthma? > > I did hear the name of the medication but I cannot remember it. > > Thanks > Donna I am Ravichandren from India(Tamilnadu).First,I don't know proper English.I discovered and giving one different type of herbal based (oral)treatment,freely to poor people,past 5 years on service basis.It cures all types of psoriasis,arthritis and some types of asthma,minimum 3 days treatment. In last 12 years back,I was attacked with Asthma.some years I have taked many treatments like aurveda ,Homeopathy and alopathy.But all are only controled,not curable.So i has read many herbal linked old books and cunsult many Tribs(who are lived in top of the hiils)for asthma.Then I research and discovered one different type of treatment,and I was taked.Only 3 days treatment Asthma totaly gone.So I I gived this treatment freely to many peoples.90% peoples are cured only 3 days treatment and some peoples are cured 6 to 10 days. Then Iwas gived this treatment to psoriasis patients and arthritis patients,kidney failier patients all are cured. So I think that and my experience ,one separate virus affects the human blood ,these diseases will be coming. This virus affects skin,skin will became hard and loses its elasticity and this virus affects Lungs,Lungs loses its elastisity and it functions are not normaly.So breething problems.This same problem to kidney.This treatment changes and cured this diseases minimum 3 days.So i think that this herbal treatment destroyed the separate virus? I don't know.But I was giving this treatment freely to poor people past 5 years.More details please visit our websit:www.curewithherbs.info or condact e-mail kamalisethu@... Thank you.This is not advertisement.Only on service basis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 > I use a scarf in winter myself. It's not too bad here yet either. We've had a couple chilly days and nights but not too bad. It could be just the way the air hits your throat when you breathe. > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 > I use a scarf in winter myself. It's not too bad here yet either. We've had a couple chilly days and nights but not too bad. It could be just the way the air hits your throat when you breathe. > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Hi Alana, In addition to chronic obstructive asthma, I also have Grave's Disease - a type of autoimmune disease that causes over-activity of the thyroid gland, causing hyperthyroidism. Due to 2 radioactive iodine treatments, my thyroid is basically " dead " - leaving me hypothyroid and on thyroid meds for the rest of my life. Rheumatoid arthritis (which runs in my family) is also an autoimmune disease causing chronic inflammation of the joints. I haven't been tested - yet - but show several symptoms of that, too. Type 1 diabetes, yet another autoimmune disease, also runs in my family but I DO NOT have that. Happy, healthy, safe, NEW YEAR! in SE Wisconsin > > Does anybody here have any other auto-immune conditions? > > > Alana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Hello,, Yes I have an auto-immune.. Rheumatoid arthritis and also reg arth,, and fibromyalgia,,, thyroid,, taking medication for it.. my dad had diabeties. Hope 2008 brings better treatment for all diseases,, and no more cases for any of us,, HAPPY NEW YEAR. Kathysea_girl111 wrote: Does anybody here have any other auto-immune conditions?Alana Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Wow!! That is a loaded question...people will respond! Does Menopause count? Big smiles and hugs!! Cindi sea_girl111 wrote: > > Does anybody here have any other auto-immune conditions? > > Alana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 I have myasthenia gravis, some arthritis  and COPD chronic bronchitis. I think they're all autoimmune.Barb B AzDoes anybody here have any other auto-immune conditions?Alana Quote Link to comment Share on other sites More sharing options...
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