Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 Hi Donna, Just one small comment on a portion of your post: >... My scalp psoriasis is also much worse. IMHO, it most likely is the stress of ALL your current problems that are causing the P (psoriasis) to worsen. In my own case, once the inflammation and pain of PA and fibro were reduced, the P settled down considerably. Hopefully, this will be true in your situation as well. Patty B in the Pineywoods of East Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 Donna: Hello back to you. I am also fairly new to the group and have found it to be a gift. I look forward to looking at all postings daily, feel much less alone and have gotten some great advice and information. The path you have traveled has many similarities to many of ours. Most notable seems to be either the lack of knowledge, or the lack of understanding our treating dr.s seem to have about the disease. I can understand your Dr.s reluctance to use many of the PA drugs for fear of increasing your liver damage. My liver has apparently been compromised by several years of PA drugs (am having my 4th liver biopsy soon) and may have to begin a very different treatment regimen. In my situation, I think recent life stresses has had a major impact on my current enormous flare up. My right hand and foot are almost useless - sausage finger so huge I had my rings cut off, and there are not spaces between my finger. Toes huge and twisted. I won't bore you or any other members with the nature of my stress (having vented already once to the group about my hubby of 21 years and the other woman), but it continues to be a bigee that is not going to go away quickly, and has taken a big toll on my PA. So - How to avoid stress when these things come to your life? Anyway, I offer you a lesson learned: Be aggressive with your PA Dr., I only recently have and am getting a bit more satisfaction; meet with a physical therapist about the right kind of activity/exercise during flare ups and more peaceful times; take care of yourself and use the group for info and "therapy" - It has kept me going and giving me the feeling of support. Good luck to you!! Toadessa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Toadessa - Thank you for your thoughtful and helpful words. I am saddened to hear of the extent of your illness, but heartened by your courageous response to them. I appreciate the advice at the end of your email immensely. I am just realizing (embarassingly, in my 40s) that I need to be more of a " self-advocate " , especially when it comes to my basic health and happiness. I've found that feeling powerless adds to my stress-level. Like the old serenity prayer, I am trying to learn how to distinguish between the things I can and can't control and to have to courage to " change the things I can " ... I look forward to learning more from you and other members of this group. Donna > Donna: Hello back to you. I am also fairly new to the group and have found > it to be a gift. .... > I offer you a lesson learned: Be aggressive with your PA Dr., I only > recently have and am getting a bit more satisfaction; meet with a physical > therapist about the right kind of activity/exercise during flare ups and more > peaceful times; take care of yourself and use the group for info and > " therapy " - It has kept me going and giving me the feeling of support. Good > luck to you!! Toadessa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Patty - Thank you for your response. I think you are right that stress is a cumulative thing. You're ill and that creates stress, but what about all the other stuff that comes with it ??-- taking medicine that makes you feel worse, squeezing in doctor's appointments, dealing with insurance companies and pharmacies, trying to hide (as much as possible) the disfiguring aspects of your illness (and deal with your own vanity), etc. all while you're trying to still work, take care of family, etc., . . you know the drill. It all adds up. I guess, being the dutiful daughter of a scientist/engineer--I was looking at the parts and not the sum of the parts. I was thinking that the Interferon is the culprit for my scalp worsening, but it is all related. Thanks again for your kind and enlightening words. Donna > Hi Donna, > ...IMHO, it most likely is the stress of ALL your current problems that > are causing the P (psoriasis) to worsen. In my own case, once the > inflammation and pain of PA and fibro were reduced, the P settled down > considerably. Hopefully, this will be true in your situation as well. > > Patty B in the Pineywoods of East Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Toadessa wrote:> I offer you a lesson learned: Be aggressive with your PA Dr., I only If that isn't something I've learned recently... If I don't practically hit my doctor over the head, I get nowhere. The biggest problem, is he's afraid of treating the patient. I mean, sure, you don't want to prescribe stuff to people that can harm them. But if there are some drugs out there that exist to treat specific illnesses, then you use them. My doctor's afraid of steroids, but nothing else has worked. So he started me on Prednisone after my insistence (I really dug my heels in) - at 30 mg per day - and it is starting to work. BUT - he's afraid..... so he's already cutting me back to 10 mg per day only for another week and then nothing. I've only been on this stuff for two weeks. " Steroids are dangerous you know " . Now am I wrong, or are some of you on some pretty heavy duty doses of that and other stuff, and with careful monitoring it is being successfully managed? I'm not asking him to give me megadoses, just some treatment... any treatment! Now that I've started to cut down, the pain is back. AAAArgh, I want to kill him. And to make matters worse, my first appointment with a rheumy has been cancelled twice because he is sick, and now I have to wait until April 24th for an appointment with another one. I swear, I'm going to lose my mind! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Hi Carolina! Glad you have joined us. I don't have any personal experience with CT in Connecticut, but I'm sure you will get all sorts of good feedback about those folks from other members here. I just wanted to say welcome! You're getting started at a great age so you should see some really good correction. Best wishes and keep us posted! Marci (Mom to ) Oklahoma > Hi everyone, > > First and foremost I would like to thank all of you for your > messages. I joined the group last weekend and have been reading > since. I have found lots of good information. My son Mateo is 5 1/2 > months and will be using a DOC band from CT soon (we are still > waiting to hear back from our insurance). > > I am in Connecticut and would like to know if any of you are in the > area and/or have worked with CT in the state. I am looking for some > parents in the area who I can talk to for questions/expectations/etc > as we begin the process with this specific CT clinic. > > Thanks again and I look forward to talking to all of you in the next > few months, > > Carolina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 I hope you feel wonderful on LDN, Joan. Your attitude sounds great. I'm still rather was disappointed not to have more symptom relief and I don't want you to have the same experience. ________________________________________________________________ Get your name as your email address. Includes spam protection, 1GB storage, no ads and more Only $1.99/ month - visit http://www.mysite.com/name today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 , I couldn't agree with you more! When you look at all the info out there on LDN and all the positive results by taking it, it's so hard not to get one's hopes up for at least some of these great results! I admit I do have some hope. I can't help it! But the way I am trying to look at it is that if all goes well, at the very least, I won't have to inject Copaxone anymore. So I am trying to think positive, at least in that realm. I guess all any of us can do is hope. Like I said, I do agree with you and I am trying to keep myself grounded, so to speak, when it comes to the actual results of my taking LDN. Thank you for trying to keep my head out of the clouds, cause I could be disappointed. Joan Quote Link to comment Share on other sites More sharing options...
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