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Thread: New to site. Will see rhematologist in July.

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    Default New to site. Will see rhematologist in July.

    My biological father has wegeners granulamatosis. He was diagnosed at 40.
    I will be 35 in July.

    Back in september I was having trouble with my eyes. It might sound silly, but I just felt like I couldn't see. I got new glasses and the only trouble they could find other than that I needed a new perscription was high pressure in my eyes. They tried to treat it as glaucoma but the eye drops they gave my caused my eyes to turn vampire red and they made my eyes hurt. So they did some weird field of vision test and decided that it didn't seem like glaucoma. Finally my eye dr referred me to a real dr. (Honestly at the time I thought I had a brain tumor because I also had a lot of unexplained nosebleeds!)

    The real doctor suspected that it wasn't my eyes at all but a sinus problem (which at the time I thought was crazy because I hadn't had a cold). He wanted to do a head ct scan but at the time my husband had just started a new job and we were waiting on his insurance. While I waited for the insurance numbers my eye problem seemed to improve so I never scheduled the ct.

    In january I downloaded a fitness app on my phone. I started counting calories. I also weighed myself regularly. And in one week with no explanation and the only thing I was doing different being keeping track I lost eleven pounds!

    After that in February my period was 17 days late. Pregnancy is not possible for me (I do have 3 school aged children) because I lost a tube to an ectopic pregnancy 7 years ago and I lost the other side ovary to a ruptured ovarian cyst in 2013 (and in 2008 I had the tube that was remaining tied). I wondered if it was because of the unexplained weight loss.
    I mention the late period because it seems like whenever I get my period my immune system dies. I seem to always catch a cold. So when I finally did get it this time I once again caught a minor sniffly type cold.

    That at small cold progressed into a chest cold and a cough that got worse and worse until 4 weeks later I finally went to the dr. He diagnosed me with bronchitis with bronchiolitis and put me on a strong antibiotic.
    Before the 10 day course of the antibiotic was up my chest hurt worse, my cough had not improved, and I was wheezier. So back to the doc. He extended my course of antibiotic for 10 more days, added 3 days of prednisone, and albuteral nebulizer treatments as neccesary.

    I I improved on prednisone. But after my dose was over my cold was just as bad.

    A week eek later out of the blue I developed a stiff swollen neck/lymph nodes and a swollen painful throat. By the next day it was the worst head cold of my life and by the next day I couldn't get out of bed. My nose was just thick yellow snot.
    I went to the dr. Upon looking at my throat he said I either had severe mono or severe strep. He ran tests for both and both were negative. He said it was just a virus and that if I wasn't better by Wednesday to call back. I stayed in bed for three days.
    Thursday I called and said I wasn't better. He called in a perscription for a weak antibiotic and a stronger 3 day course of prednisone.
    I started it immediately. It was so crazy but within hours of taking the prednisone it was like my body just relaxed and sighed with relief! I improved only to the point of functioning.
    Two days after I stopped taking the prednisone I was just as sick as I had been to start with!

    At this point I mentioned that bio dad has wegeners. So I went back to doc. He ran some blood work (NO ANCA TEST). He said that everything looked normal and "there are no signs of inflammation so there is no way you have wegeners". He called it a very bad virus and said that my body just couldn't handle it. He decided to do a 15 day tapering down dose of prednisone.
    I felt functional on day 1 through 3 but just not better like I felt I should. (Keep in mind that from that first bit of time in feb, I had been sick for 11 weeks already).

    So so I called back my doc. He said he had done all that he could for me and said I should see a different doc. She scheduled me for the next day.
    The very first thing she said to me was that she has a wegeners patient and that I could absolutely have that. She could not believe how awful my nose looked! My bp (which had slowly been rising through this whole sickness) was a ridiculous 141/101!
    she reviewed the labs the previous doc had ran and said that they were not normal, that my sed rate was very high.
    She said she wanted me to see the soonest available rhematologist (which is now my appointment in July). And she said she wanted a ct scan of my head and neck. They got me in for that immediately.
    My ct scan showed that every sinus cavity in my head that could be infected was deeply infected and one showed nodules. My tonsils were swollen and my lymph nodes were swollen. They had me come back and get an antibiotic shot and she put me on another antibiotic.

    So so now I have 2 days left of prednisone, a half tablet each day. I am afraid that once I am done with that my cold will come back full force (as I have improved but still cough and still stuffy nose.

    The thought of facing wegeners as a diagnosis is a scary prospect.

    On on a side note I have also been flipping exhausted since this whole thing started. My ears have also been plugged. And I have also previously dealt with tounge ulcers.

    Thoughts?

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    Oops. And one thing I forgot to mention. I have had an unexplained face rash for years. It almost looks like webbing or raised vveins. But my face is smooth as can be. It's just a red vein webbed look.

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    Hi,

    From what you've reported, you could have GPA/Wegener's. Is there any way you can get to see a rheumatologist before July? (preferably one with experience treating GPA)? Where are you located? You should go to the Vasculitis Foundation's website where you will find a list of experts your local doc can consult with (generally at no cost). You could also try to get an earlier appointment if you live close to any of them.

    If you're located near one of the Vasculitis centers of knowledge (Cleveland Clinic, Mayo Clinic, Johns Hopkins, etc) in the U.S., you may be able to get in much sooner. Also, Cleveland and Mayo have satellite centers that may be more accessible for you.

    Good luck and welcome to the Forum. This is a great place to share experiences, get advice, or just vent when you're frustrated with our dumb disease. There are people from all over the world on here, so there's someone looking at this forum almost 24/7/365.
    Last edited by Pete; 05-07-2015 at 12:00 AM. Reason: Finished after interruption. Grandkids showed up a little early.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Welcome to the forum, 3lazycats! This all sounds very Wegener's like to me, too. Don't be afraid of having it, it isn't the end of the world, but you do need proper treatment ASAP. Most of us here have done well with treatment and are living reasonably normal lives.

    It is true that you need a good rheumatologist with experience in WG, or who can rule it out if you don't have it. However, July is a long time to wait, and if you can't get a rheumy soon, there are other alternatives for more immediate action. Do you have an ENT? It sounds like you need one. He or she can clean out your nasal and sinus passages, look at your CT scan and bloodwork, and take a sample from this area for a biopsy, which could diagnose you. The second doc you saw should be able to refer you to someone and follow through on the results. If the biopsy comes back positive for WG, any doctor should be able to start you on treatment. If they are uncertain, they should be able to consult with one of the experts Pete mentions above. But it is not that hard to find out what meds are commonly used, and in what amounts, in a case like yours. I would also keep checking at the rheumy's office for possible cancellations, so that you could maybe get in earlier. Eventually, you want to be sure you are getting the best treatment possible from an experienced rheumy and other members of a medical team, as necessary. But I think it is important that you get started before much permanent damage is done, which could lead to permanent hearing loss, septum collapse and 'saddle nose', etc. Best of luck to you, and keep us posted. Finding this forum is a big step in the right direction! We are not doctors, but have lots of helpful experience in this disease.
    Anne, dx'ed April 2011

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    Your situation sounds too similar to mine and I am sure many others. The fatigue is probably my worst symptom I dealt with prior to and immediately post start of treatment. I hope you can get into a rheumatologist sooner rather than later so you can start to get things straitened out.

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    Welcome 3lazycats, this is the place to be for anything WG. Lots to learn, share, vent, etc. Sounds as if you have some form of an AI for sure. My sinuses were pretty much wiped out, and I ignored the signs of rashes, wandering aches, feeling rundown all the time, the cough...until the blood started coming out. Docs suspect that I had this for at least 2 years prior w/o a proper dx. I pushed it too far and ended up in ER, ICU, and rehab for 17 days...10 of which I was out cold and on life support. You don't want to get to that point. Nearly 4 years later now, I am 'normal' as in new normal and functioning quite well. We all have to learn how WG has affected us and how to prevent that again if possible. I'm at a point where I'm nearly off the MTX and completely off pred now for a year. I keep hoping I'll get off the mtx, but docs take no chances as my ANCA continues to hover near the cut off point. This is a long road for us, and you will/need to get educated about the disease & continue to deal with it appropriately (not thru hearsay or the newest discovery out there) with proper docs, meds, rehab, and support. Best to you...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    I finished my last prednisone on Thursday.
    I finished my last antibiotic yesterday.

    And today my cough is worse.

    I really wish I could get in before July.

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    Hi there,

    I hope you do not have wg but all of your symptoms sound all to familiar. I have not heard of it being hereditary. I was diagnosed over 20 years ago and now am going through one of the worst flares ever. My ent diagnosed me at that time. I now have kidney,lung, involvement along with severe fatigue,saddle nose, I have been on 40mg prendisone daily for almost 2 months. Now with side effects tingling in legs and hands, moon face, muscle weakness, dizziness. The disease is horrible. Try to see your Dr before July.

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    It makes no sense for you to be stopping prednisone if any doctor thinks you well may have WG and you are not on any of the standard immunosuppressants. Like everyone says, July is too long to wait to see for sure if you have it and to get treated for it. Can you try another rheumatologist? Or ANY other doctor that can help you? An ENT or an experienced internist who knows how to get a diagnosis and what the treatments are? I should be seeing a rheumatologist but I'm not. I'm being treated by my pulmonologist, and while he isn't my favorite person, it has worked out pretty well. I haven't switched to a rheumy because it is too hard to know, in my community, that there are any rheumies who have WG experience and would be any more qualified than my pulmy. The point is it doesn't HAVE to be a rheumatologist to get you started, if one isn't available! You can always wait until July to see him, but having gotten a start on your treatment ahead of time would be a big head start in slowing down the progress of the disease and preventing damage. The rheumy then can always change or adjust the treatment later. I really don't think this can wait! Please try to get seen by someone who can dx and treat you, or get one of your docs to push for the rheumy to see you sooner. I really don't understand why any of them would think it is OK for you to wait.
    Anne, dx'ed April 2011

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    Welcome to the forum. As others have said it sounds like Wegeners to me. I agree with everyone else - July is too long to wait to see the rheumy. Did you make the appt or your dr? I would ask the dr who recommended you see a rheumy to make an appointment for you and to explain that your situation is urgent. Another dr can get you in sooner than if we make the appt ourself. I wish you the best.
    Karen; dx'ed April 2014

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