Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 In a message dated 12/6/00 11:29:04 AM Eastern Standard Time, lizwizz2000@... writes: << Donna, yes my breathing difficulties used to come on very quickly, but not so much now I am on meth, imuran & pred! If taking the pred does not relieve it GO TO THE ER, you must always take breathing difficulties seriously. Feel better, love Liz >> Hi Liz: Thanks for responding. Like I said that was the first time I ever had a " attack " come on so quickly. I did take prednisone when it happened and like you said it did help. What do they do for you at the ER? The reason I ask is the ER by my house is not the one that my doctor belongs to. I'm afraid that if I had to go to ER I wouldn't be able to communicate as I am unable to speak when I get hit with an attack like the one last week. Hope to hear from you soon DonnaCA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 In a message dated 12/6/00 6:21:06 PM Eastern Standard Time, kagor@... writes: << You mentioned a medic alert bracelet to Donna....do you wear one ? What kind of information would you suggest? RP is so involved, that I find it difficult to limit it to 50 letters in 3 lines...thanks...karen >> I dont have an id bracelet, but it does sound like a good idea to get one, where do you get them from? DonnaCA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 Carolyn, You mentioned a medic alert bracelet to Donna....do you wear one ? What kind of information would you suggest? RP is so involved, that I find it difficult to limit it to 50 letters in 3 lines...thanks...karen On Wed, 6 Dec 2000 10:49:29 -1000 " C. Pang " pangc002@...> writes: > > What do they do for you at the ER? The reason I ask is the ER by > my house > is > > not the one that my doctor belongs to. I'm afraid that if I had > to go to > ER > > I wouldn't be able to communicate as I am unable to speak when I > get hit > with > > an attack like the one last week. > > > > Hope to hear from you soon > > DonnaCA > > > > > Hi Donna! Don't worry, they'll know what to do. They'll do things > like > check you out (listen to your lungs etc) and then give you breathing > treatments, hook you up to an IV and give you IV meds (which work > faster), > depending on your age may give you shots of certain medications that > open up > the airways even faster. They're used to having people not be able > to talk. > Don't forget to always wear your medic alert bracelet!!! > Aloha > Carolyn > > > -------------------------- eGroups Sponsor > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR > DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A > SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER > EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. > THANK YOU > ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! 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 December 6, 2000 Report Share Posted December 6, 2000 > What do they do for you at the ER? The reason I ask is the ER by my house is > not the one that my doctor belongs to. I'm afraid that if I had to go to ER > I wouldn't be able to communicate as I am unable to speak when I get hit with > an attack like the one last week. > > Hope to hear from you soon > DonnaCA > Hi Donna! Don't worry, they'll know what to do. They'll do things like check you out (listen to your lungs etc) and then give you breathing treatments, hook you up to an IV and give you IV meds (which work faster), depending on your age may give you shots of certain medications that open up the airways even faster. They're used to having people not be able to talk. Don't forget to always wear your medic alert bracelet!!! Aloha Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2000 Report Share Posted December 6, 2000 Hi ! Are you getting the emails from the RP group yet? I didn't realize when I filled out the form that they only wrote the first part on it. I'd suggest putting relapsing polychondritis and then anything else that they would not do tests for routinely and would be important -- ex would be chronic prednisone use, etc. first, then lkist your other dx's etc. If you send me a list of your dx's and meds I could rank them for you. You can order online -- medicalert.com or medialert.org, I forget which Carolyn Re: Breathing difficulties > Carolyn, > > You mentioned a medic alert bracelet to Donna....do you wear one ? What > kind of information would you suggest? RP is so involved, that I find it > difficult to limit it to 50 letters in 3 lines...thanks...karen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 They can put ALL THAT on ONE bracelet? I guess I'll need a hip belt! LOL, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 , thank you that may save my life one day. Hats off to you and THANKS! Lol, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Tayna, I have full tracheal collapse with a very swollen thyroid, lymph involvement and an esophagus that has a backwards anroyism.So I am well aware of this feeling. With the involvement with the lymph glands in your throat, it does not sound like tracheal involvement.But it should be thoroughly checked into. There are many reasons for your shortness of breath ( SOB ). If it is your glands they can be swelling and pressing against your trachea causing that choking sensation. RP can effect the glands in your throat region. The thyroid is the primary target. But the lymph, parathyroid and a bunch of others also contribute to the problem. To have this checked it is best to see an endocrinologist. Esp. one that understands immune disorders. Carolyn's advise was good. But I would also have the doctor request that you have the breathing maneuvers called valsalva and cine-loop done also. This request has to come from the doctor or the radiologist ( usually the tech. ) won't run them. You can have perfect lung function and still be short of breath. Stenting is usually the last phase of treating tracheal collapse today. The first line is to run a sleep study and place you on a c-pap or a bi-pap machine. At least at night. They use air pressure to force open the trachea giving your trachea a chance to " feel " . They are getting excellent results from this method of treatment. But like all treatment programs it has to be prescribed correctly and administered correctly. Usually it is an Thoracic disease of the chest ) doctor that would handle this problems. And not a pulimologist.( who spec. in the function of the lungs ) Are you using any inhalers that have a steroid in them? If so this can also cause the choking feeling and are not recommended for persons with a weakened trachea. Reason why is that there are several large blood vessels that wrap around the trachea in the throat region. The steriodal inhalers dilate the blood vessel compounding the problem. Several medications that are used to treat RP and RA can also cause SOB. There is also another anomaly that you may be experiencing. Do you have a lot of bloating and burping? Or GERD? These can also cause the esophagus to press against the back of your trachea causing SOB. Since there are so many different reasons that you could be having this problem I would highly recommend that you have a long talk with your PCP. Give him/her a copy of Dr. Trentham's report on RP. And have the correct tests do by the right specialists. What ever is the cause or the multiple causes. Being SOB is serious and you will need to have your doctor aggressively pursue this matter. Wishing you the best Love R. Quote Link to comment Share on other sites More sharing options...
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