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Thread: This is all new, scary, and very surreal.

  1. #1
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    Default This is all new, scary, and very surreal.

    I cannot tell you how happy I was to stumble upon this group while researching various treatment options and trying to understand what this diagnosis is and means. Your positive and supportive spirit on the threads lifted me up when I was feeling frightened and overwhelmed.

    My mother has been deteriorating over the past year. Her RA getting worse and worse. Even being sent home from her job in a shipping receiving plant. She is 62 (and a smoker). Since February she has developed numbness in her left leg, and a sort of tingling sensation. I flew back for her mothers funeral and I couldn't believe how she shuffled, the pain she was in, and how she hadn't slept because of it. When her RA Dr. sent her for a chest CT I knew something was up. I was afraid it was cancer. The next two weeks became a whirlwind. My moms CT shows that she had pulmonary lesions (cavities). Chunks of lung gone! Still afraid is was cancer, we didn't understand why we were being sent next to a Kidney Dr. (good news is. That day was my mothers last cigarette!)

    I got a call from her pulmonary Dr. telling me about Wegeners. He was positive that was it and the Kidney biopsy would confirm it. The more I researched, the more the Kidney Dr. spoke... the more I tried to understand this strange disease. He called it a medical Zebra. Every symptom leads one to think horses... typical. But this diagnosis is the Zebra, the unusual, the not expected.

    My mother had the biopsy, she's also had a bronchoscopy with bronchial lavage, and a lower back CT (which came out clear). It's been two weeks since all those tests and even now on 50mg of prednizone a day, apo-hydroxyquine 200mg (since 2013), pmg-gabapentin 300mg, a day... the Tylenol #3 for pain. which sometimes works, but not really since she is still shuffling and having a hard time sleeping.
    The leg numbness is what's really driving her nuts. Has anyone had a similar experience and what advice do you have about treating or managing with it?

    The Drs have asked me to make sure I understand the course of treatment and to do my research. Which is how I found this site and the wealth of information. This week I'll be FaceTimed into her dr. appointments. and the hope is that treatment will begin next week.
    Thank you for this group. Thank you for your posts.

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    Welcome Urbanator
    I can relate to your moms muscle fatigue and pain, that's what really drove me to see a doctor when I got diagnosed back in 2000. from what I've read and my Rhumy tells me Rituxan is the go to choice now days, I took Cytoxan though and it worked well for me.

    I've been told there can be several things that can cause numbness and tingling. For me I've actually had blood clots in my left leg twice now, first time when I was really sick and couldn't get around very well. I was then tested and diagnosed for Factor V lieden which makes a person more prone to clotting. and again last fall close to the same spot in my leg as the first one so they believe it was caused by my varicose veins in the area, and my Factor V contribuiting.

    Once I got diagnosed and started treatment my condition greatly improved and I'm sure the same will happen for your mom.
    be sure to ask any questions you have, there will be somebody who will give you advice
    Dx'd December 2000

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    Welcome to the best source of caring people, with vast knowledge on this crazy disease, you will ever find. When your at the docs office make sure you take a pen and paper, to jot down things. This disease can be very complicated and it helps to take notes and to write down questions to ask about. I have neuropathy in my hands, legs and feet ( nerve damage), caused from the Wegeners. I know have to be treated by a neurologist. She may need to see several different specialists along her journey. The most important specialist of all to see, is a Wegeners, make sure she has a good one. Best wishes to your Mom on her treatments and to you as her advocate.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Welcome Urbanator & your mum
    Best place for help advice & support on your own journey xxx


    Sent from my iPad using Tapatalk

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    Welcome. You will find lots of help and comfort here. I do NOT have Wegeners. I was misdiagnosed, but stayed on anyway as I find much to help with my respiratory issues.

    Just wanted to make a suggestion. Have your mom check with her doctor first of course. But melatonin has been very helpful to me when the prednisone is keeping me awake. Adding sleep deprivation to everything else can be very discouraging. Melatonin is an OTC supplement and is not likely to cause dependence.

    Glad you found the group!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    I am glad you found our forum too,this is a place to come to ask questions,get answers or just vent away.So sorry to hear your mom is going through such pain but with the right drs. and the right medicine, in time things will get better.First of all,don't believe everything you read on the internet,it will just scare you.Things are not as bad as it says.Don't get me wrong though ,this is a serious disease and its needs to be treated promptly and the right way. The good thing is she did quit smoking. I also have involvement in my lungs and in order to get the right diagnoses I had to get a partial middle lobectomy,that was the day I quit also.
    You can go to The Vasculitsis Foundation website for more info and I believe they should have lists of drs in Canada but if not there are several people on this site that can steer you in the right direction.The most important thing is to find a dr that has expertise in wg..even if you have you travel at first ,most drs will consult with your home dr on what treatment and like Jana said before it is over with she will have a list of drs she will be seeing since this disease can effect every part of your body. But please do not hesitate in getting her to a specialist because untreated things can go downhill very quickly. Good luck and keep us posted and ask away.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Urbanator: check out vasculitisfoundation.org for a list of specialists near you. I recommending consulting a specialist and having them treat your mom, or else having them coordinate/direct care with her doctor. It's a rare disease and no doctor should hesitate to work with a specialist. Good luck to both of you!

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    Welcome urbanator, You have come to a great place for support and answers to your questions.
    Karen; dx'ed April 2014

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    Welcome, Urbanator. Coming here is a huge step in the right direction for understanding this disease in its many variations and allaying some of your fears. If her current lung damage from WG is severe and progressing, CTX (cyclophosphamide, Cytoxan) may be the first drug of choice for getting it under control quickly. It worked well for me, and I had cavitations scattered throughout my lungs, though they were small and did not comprise large chunks as in the case of your mom. I think they shrink but may never fully heal, so my lung capacity may be permanently diminished, and I get a little out of breath, but it could be a lot worse. RTX is considered the state-of-the art treatment, but m ay not act as fast, though it can always be used later, and it's not good to stay on CTX any longer than necessary. There are several other meds used, too, according to individual situations. I concur with others that your mom needs the most experienced WG doctors she can find, though other competent doctors may get her started on treatment in advance of getting appointment with specialists, and they may consult with WG specialists on this list: VF Medical Consultants . Best wishes to you and your mom and please keep us posted on her progress, as well as joining in any discussions and asking any questions.
    Anne, dx'ed April 2011

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    Quote Originally Posted by Urbanator View Post
    I cannot tell you how happy I was to stumble upon this group while researching various treatment options and trying to understand what this diagnosis is and means. Your positive and supportive spirit on the threads lifted me up when I was feeling frightened and overwhelmed.

    The more I researched, the more the Kidney Dr. spoke... the more I tried to understand this strange disease. He called it a medical Zebra. Every symptom leads one to think horses... typical. But this diagnosis is the Zebra, the unusual, the not expected.

    Thank you for this group. Thank you for your posts.
    They have a diagnostic program called Find a Zebra and when i put in my symptoms or some of my symptoms Wegs is first or second thing that came up. You might find it interesting to try and see what it suggests.
    Knowledge is power! Wisdom is using it to make good decisions!

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