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Thread: Cannot figure out what to do next

  1. #11
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    Debhaz22
    Have you seen a kidney specialist? This is how they found my wg. I was lucky enough to catch it before damage to my kidney's. I am also new to the site and disease. Am still figuring out how to move around the site.
    I thought wg primary target was 1st kidneys, then lungs, nose, eyes and ears. I am in northern KY. and have the greatest Dr's. In fact my kidney dr. saved my life, according to the other 3 drs, by putting me in the hospital for a week with 2 blood clots and phenomena. Hope you find some dr's that will help.
    Let me know if you find out what is wrong.

  2. #12
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    I feel bad, you being so scared. It's always more frightening when you don't really know what is going on. My daughter is coming over tonight to use my computer to catch up with everyone. She has had Weg for over 20 years, and what you are going through I think will sound real familiar to her. Things will work their way out for you in a little while, I feel they will.
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    Be gentle with yourself, you are doing the best you can ~ LillysMom

  3. #13
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    How did it go today with the ent ,Deb ??? Were you able to get though to any drs. ?
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #14
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    Oh Deb, I feel for u so much. You are in a terribly frustrating place that I would guess all us Weggies have been in at least once, if not more times!! When I was finally diagnosed with wegeners, thats when I realized doctors are not Gods, and they do not know everything! They are just like us, they just studied medicine, and it depends on what they have learned as to how they can help us. And their personalities definatly come into play also when they treat us. Some WANT our opinion, and want to know what we feel and think may be going on in our body, and make us feel comfortable opening up and telling them things and not rush us, etc......others think they know it all, and want to tell US what is going on in our body.....which is GREAT if they are at least listening to us and not making us feel crazy for the crazy things are happening to us!! We just need to find a doctor with a happy medium, and one who is open minded and will also consult with other doctors with other specialities, so they can figure it out. The Rheumatologist assigned to me in the ER called in an ENT and an Oncologist, and also Another Rheumatologist. They all Talked, then each did their tests on me for a week, then met again and consulted. Even then, They were "85%" sure it was Wegeners (this was 23 yrs ago) So thats what they started treating me for. As time went by, we became positive that is what I had, and I have had some awsome doctors!
    Also, about you not healing...... After I had had wegeners for 17 years, I had a simple arthoscopic knee surg to remove cartlidge pieces floating in my knee. A simple surg that people have all the time. Well after I had it, my knee was never the same. It kept swelling, and I had to have it drained every 2-3 weeks, then I had 3 more knee surgeries, all arthoscopic, and after each one, my knee slowly just started falling apart! It would not heal, it basically turned to jelly. There was not a doctor I could find that would TOUCH my knee anymore!!!! I think the doctor that did all my knee surgeries was embarassed, becaused he was so well known for being such a fantastic surgeon for the football players at the University Of Alabama College!! He finally told me he just would not, could not do anything else to my knee. He gave me the name of a surgeon at UAB. A well known University in Birmingham, and he saw me for 2 minutes, and scheduled me for a Total Knee Replacement in 3 days. I was terrified that after the surgery, the bone would disinigrate around the metal that was drilled into the bone. But thank goodness, I have not had a problem with it at all except for pain, which I have lived with since the beginning, so pain is just part of life. Not just for us Weggies!
    I say to you.....Dont be afraid to speak up! You dont have to be mean, just ask questions, tell them things that are happening that you dont understand and see if they can give you possibilities. Tell them what YOU think it could, or could not be. Just try to find a doctor that you feel that you and him can work togaher, and he wont be upset if you bring another doctors opinion in the mix. If a doctor is a smart aleck or mean or puts you down, I just think u should look elsewhere. I know you are scared and confused. You are very intelligent, I can tell, and you really do need to get treatment soon, very soon. The doctor who treated me for the first 10 years, he and I did many different treatments, as times changed and new treatments were tried. We settled on what was best for me, but he always asked me how I felt and what did MY BODY tell me, how did I feel about what we were doing. He also was constantly learning as much as possible about wegeners, as it was relatively rare when I got it in 1990. The ANCA is not a test that is a yes or no test. From what I understand, it is different for every wegeners pt, and they have to do them each visit and look at the average........I could b wrong, but thats how my rheumatologist explained it. If it fluctuates from the average it is for you, then something is going on in your body. Keep us posted!!! There has to be someone on here that lives close to you that can steer you toward a good doctor in your area. Ill be praying for you! Stay strong, dont give up, and go find that doctor that is going to get you on the right track. Write anytme to me if you just need to vent! Ill listen!! Ive been there, we all have.
    Life is a Gift~ Lilly

  5. #15
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    Hi John, welcome to the site. I am still learning my way around, but no matter how you get around the site, and while you learn, there are always things I learn and people I meet that are so awsome! I had ear, sinus and eye infections for a year before wegeners finally took me down, and all my joints in my body were involved and I could not walk anymore. Thats when I finally went to the hospital. (Oh, I forgot about the kidney infection I had that put me in the hospital about 6 mo before I was diagnosed) but it went away and I never had any more probs with the kidneys after that. I was about 2 weeks away from being critical, I had so many tumors in my lungs, and my nose was full of small tumors also. Im glad you have great doctors, soooo important!!!! I certainly hope that Debhaz22 finds a good dr soon. Nice to meet you!
    Life is a Gift~ Lilly

  6. #16
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    Lilly
    Sorry it took so long to get back to you. Today is a good day so I thought I would surf the site and maybe I will learn how to use it (: . I am applying for disability from teaching. Have 3 dr's that agree. Trying to stay away from people with colds or the flu as I was told my immune system is low. The classroom might not be a good place to be. Nice to meet you also.

  7. #17
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    Are your lungs or kidneys involved? With the possibility of WG, have they looked at your lungs or kidney function? My symptoms started with a stopped up ear in early spring, and the docs said there wasn't anything to do about it! I had autophoney too, which was terrible!! Then before I knew it I was running a fever and having chest pain and ended up having multiple tests, including an open lung biopsy because my lungs looked so bad, and a 15 day stay in the hospital. The biopsy was what showed the WG, I had never even heard of it. It my doc had thought to check my ears more closely months ago maybe I wouldn't have the lung involvement! I wish you well!

  8. #18
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    Hi Sectech1, I'm sorry to hear all you went thru! When were you diagnosed? How long did you "know" something wasn't right until you finally had a diagnosis?
    I lost some of my hearing in my right ear almost 2 years now, and they didn't do anything about it. (They didn't think it strange 1 ear had PERFECT hearing, the other was at 60%??) Anyway, I haven't been officially diagnosed with WG since my nasal biopsy was negative. I think I only have (or had back in last year 1 nodule on my lung). Do you always develop fevers? I haven't had any. My asthma has defiinately gotten worse the past year or so but my lung function test in Aug was normal. I'm on 4 asthma meds now. When I went for my 2nd hearing test last May the Dr. asked if I'd been tested for WG, I'd never heard of it, so went to my Rheumatologist, C-ANCA was positive but PR3 was negative. And here we are...STILL waiting for an answer...

  9. #19
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    Quote Originally Posted by debhaz22 View Post
    Hi Sectech1, I'm sorry to hear all you went thru! When were you diagnosed? How long did you "know" something wasn't right until you finally had a diagnosis?
    I lost some of my hearing in my right ear almost 2 years now, and they didn't do anything about it. (They didn't think it strange 1 ear had PERFECT hearing, the other was at 60%??) Anyway, I haven't been officially diagnosed with WG since my nasal biopsy was negative. I think I only have (or had back in last year 1 nodule on my lung). Do you always develop fevers? I haven't had any. My asthma has defiinately gotten worse the past year or so but my lung function test in Aug was normal. I'm on 4 asthma meds now. When I went for my 2nd hearing test last May the Dr. asked if I'd been tested for WG, I'd never heard of it, so went to my Rheumatologist, C-ANCA was positive but PR3 was negative. And here we are...STILL waiting for an answer...
    Deb you definitely need to find a dr that will treat you. Are they waiting for it to jump up and slap them in the face? You only need one nodule for it to be a concern. They do tend to multiply if not treated. My lung function test were normal too. How long has it been since you had a chest CT? Ask your doc for one now. Do the asthma meds work? I've had a lot of tightness off and on in my chest since my bronch in Nov. The inhalers don't do much and the nebulizer works somewhat. I'm not totally convinced mine is the asthma. Instead I think it's related to the Wegs. Your's could be too since they have no idea what is going on in your lungs from what it sounds like. I can't remember if your Rheumy has any experience with Wegs. If you're near a University Hospital that might be a good option to finding one that is experienced with Wegs. Did you ever get through to Cleveland Clinic? Keep us posted and keep pushing your docs.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  10. #20
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    Seems we are sailing on the same ship. I have had pos. then neg. then pos. ANCA test nasal biopsy was inconclusive. My Dr. said he prefers not to start treatment a positive biopsy. Since then sinuses are burning, nose runs, have congestion in my chest and now my ears feel like I'm at the bottom of a deep swimming pool. Will see the Reumy. on the 11th of Feb. maybe will get some answers

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