Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 , I'm so glad you found us too. Isn't it just the greatest group of people ever!!! I can sympathize with you about losing your Dr. My PCP of 9 years left just after I was dx with RP. He was the one who kept trying for years to dx me too. I was like losing part of my family. In fact that same year I lost my mom, my dog, and my pastor... BAD YEAR!!! LOL I'm glad that everything is starting to look up for you now. Hopefully it will be a good year for all of us. You just keep on pouring those words out. It is as good for us as it is you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 , Wow is all I can say. You have come a long way in such a short time. Take care and hope things are begining to look up! Lots of Love Glenda ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Glenda, Looking up got a whole lot easier when I found you all and this support group. I know I get very "wordy" in my emails, but no one I know has ever heard of such a thing as RP. I found it easier to just not talk about it because I didn't want to talk about the aches, pains, shortness of breath, etc. Now, it's kinda pouring out of me! I loved seeing the pictures of your Oklahoma trip (I'm originally from Okla City) and can see myself smiling right along with you. I look forward to meeting all of you someday soon. Re: PART 1-'s History , Wow is all I can say. You have come a long way in such a short time. Take care and hope things are begining to look up! Lots of Love Glenda ____________________________________________________ IncrediMail - Email has finally evolved - Click Here 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 --- wrote: That is some history! Thanks for sharing. Sharon > Heidi, here is my history. It's lengthy and pretty > detailed, but I had repeated it to so many different > doctors that I began writing it down early on. As I > look back, the symptoms jump out like classic RP. > Reading all of the other histories has been so > helpful in better understanding this disease. > Thanks for your tremendous efforts. > > > In early Sept. 2000, I went to my PCP with symptoms > of a sinus infection, flu-like aches, and a feeling > that my ears were stopped up. I had just flown back > from Dallas and felt like my ears never popped open > after we landed. That Dr. said my ears were bulging > and I probably did have a sinus infection, so she > started me on an antibiotic and Humibid. After 10 > days, I returned to her, feeling worse, not better. > So we tried another antibiotic and a 6-day Medrol > Pac - my first time on steroids. I felt great for > the first 5 days, but on day 6 was back to the same > symptoms. My 3rd appointment was with another doctor > as my PCP was out of the office. He put me on > another round of antibiotics and a 12-day dose of > Prednisone. He also thought maybe I had a sinus > disease and scheduled me for a sinus CT and > follow-up appointment with an ENT. The ENT found no > sinus disease but put me on a forth round of > antibiotics and prednisone for 12 days. On day 13, > all of my symptoms returned. By now it was > mid-October. I woke up one morning with an > incredible wheezing every time I took a breath. I > went back to my PCP. She thought I'd developed > asthma and prescribed 2 asthma medications and 12 > more days of prednisone. > > Since I'd always enjoyed good health, I was > completely baffled by all of this. So, I started > keeping an Excel spreadsheet of my symptoms, > doctors' appointments, medications, and results. > This proved to be invaluable because with each new > doctor I was referred to, they'd ask me to start > from the beginning. I simply took a copy of my > spreadsheet and walked them through my medical > history to date with all the facts. > > By late October 2000, I developed a violent cough. > In fact I coughed so hard I hurt my back. My PCP > prescribed Tusselin Perls to stop the cough. In > early Nov, I awoke thinking my entire chest cavity > was on fire. My husband took me to the ER and after > a chest x-ray and discussion of my symptoms, the ER > doctor thought I was developing pneumonia so he > prescribed yet more antibiotics. The next morning I > called my PCP and said, " Look, you know me...I never > get sick. What's happening to me? " Her reply was, > " Well, sometimes your immune system can get turned > on and just forgets to turn off, then it sort of > attacks your own body. " I asked when this would > stop, and she said, " Well, I don't know. I've only > had one other patient and it took her about 2 1/2 > years to get better. " > > The next morning, my husband took me to a new doctor > who said that 2 1/2 years was just not acceptable > and vowed to find out what was wrong. He did a chest > x-ray and said, " This is not pneumonia, but you do > have a fractured rib from coughing so violently. " He > also did an EKG and then blood tests that showed my > SED rate at 110. He thought from my chest pain that > I was having a gall bladder attack. He referred me > to a surgeon who ordered abdominal scans and other > tests. My gall bladder was removed the next week. > The pathology reports showed that it was diseased. I > felt relief from the burning pain, but the more > chronic pain in my chest persisted. In early > December 2000 I was referred to a pulmonologist who > diagnosed me with costochondritis. After starting me > on 40 mg of Prednisone I finally got relief from > that pain, but my Pulmonary Function Tests were > about 50% of predicted and I was extremely hoarse. > He ordered more blood work, scans, etc. and asked me > to come back in four days. I had no energy to move > at that point and would sweat profusely just getting > into the car. If my husband hadn't taken me to all > of my doctor appointments, I don't think I would > have made it. When I arrived for my appointment, the > Pulmonologist had reviewed my results and had made > arrangements to admit me into the hospital. My liver > enzymes were about 15 times higher than normal and > my SED rate was over 110. I also told him I felt > like I had a weight on my chest when I was lying > down. He formed a team of specialists including a > Cardiologist (heart was ok), a Gastroenterologist > who did more liver function tests, an Infectious > Disease doctor who kept running different blood > tests, and an ENT who confirmed that my sinuses were > okay. I was really jacked up on Prednisone at this > time and felt no pain, but each doctor visit began > with, " Where do you feel pain? " At 240 mg of > Prednisone, I felt like building a small wing onto > the hospital! After 8 days, my liver enzymes started > going down and none of the blood work pointed to > anything conclusive, even the Wegener's > Granulomatosis came back negative again. So with > reduced Prednisone (40 mg) and more asthma > medication, I was discharged to go home where I > slept for 20 hours a day. > > Near the end of December 2000, two of my finger tips > turned red and began to swell. I went to the > Pulmonologist who prescribed an antibiotic and > referred me to a Rheumatologist thinking some type > of vasculitis may be involved. Before I could get > into the Rheumatologist my right elbow, right big > toe, and left knee began to swell. My PCP did a > blood workup and said my SED rate was 110 and > climbing. He called the Rheumatologist and said, > " She's on her way-work her in! " The Rheum. aspirated > my knee and had it cultured. There was no infection > because of the antibiotics I was still on for my > infected fingers. There were no crystals and the > Wegener's Gran. test also came back negative. I > stayed on Prednisone to control the swelling and saw > him every other week or as needed. In January, my > PCP asked me to see a Pulmonologist colleague that > he knew would not give up until he solved my mystery > disease. He said he could just look at me and tell I > wasn't getting better. He also looked up my nose and > noted that it was very swollen. I thought it was > just stuffy and was taking Afrin. The new > Pulmonologist did another Pulmonary Function Test > and noted that my breathing was getting worse-42% of > predicted on expiration. He wanted to review all of > my past medical history and then schedule me for a > bronchoscopy. In early March 2001 I had the bronch > which revealed that my trach was about the size of a > straw. The Pulmonologist's eyes were as big as > saucers. He said, " You're going to Mayo Clinic next > week. " > > The next day, I saw the Rheumatologist again and > told him I was going to Mayo. He asked me if I'd > ever had any ear problems. Yes, I had for about a > week back in February, but I thought the ear was red > from bending it while sleeping since I could no > longer breathe well enough to sleep on my back and > had to lay on my side. He then asked about my nose. > I told him about my PCP's comment that it was > swollen back in January just before the ear > incident. He left the room and came back with a > medical book, and we began to read about a condition > called Relapsing Polychondritis. He'd seen one case > in his 20 years of practice and thought this might > be it. He then called my Pulmonologist who had > already consulted with his colleagues about this > same possibility. They felt sure that Mayo could > confirm their suspected diagnosis and prescribe a > treatment plan. By March 29, 2001, I was diagnosed > with both RP and Wegener's Granulomatosis > overlapping (Mayo's testing was more sophisticated > than the blood work I'd had done here and I now had > a positive C-Anca). My PFT was now 32% of predicted > on expiration. The treatment plan was to start > Cytoxan immediately and go up to 150 mg per day > along with 40 mg of Prednisone, Fosamax, Bactrim DS, > and Prevacid for my stomach. Weekly CBC's and urine > tests were done in my PCP's office to monitor my > white blood count and kidneys. We planned to start > decreasing the Prednisone by July. > > The bottom line is after 6 months, 14 doctors, and 3 > hospitalizations, I got my diagnosis and treatment > plan. I give full credit to my PCP who never knew me > when I was totally healthy, but listened, asked > questions, read all of the other doctors' notes, > kept studying my spreadsheet, and kept referring me > until he got some answers. He also fought with my > insurance company when they refused to pay for > certain medications and even involved the insurance > commissioner when they denied my Mayo claims. Note: > on 1/1/02, I had to change insurance companies and > he's not in their plan...very, very sad. > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 , Thanks for sharing your story with us. You sure went through a lot to get a diagnosis! Patty B. Quote Link to comment Share on other sites More sharing options...
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