User Tag List

Likes Likes:  0
Results 1 to 8 of 8

Thread: ANCA-assoc. vasculitis w/ moneuritis multiplex

  1. #1
    DesertRose Guest

    Default ANCA-assoc. vasculitis w/ moneuritis multiplex

    It all started last June with a bout of uveitis followed several months later by a diagnosis of severe rheumatoid arthritis by one rheumatologist who began treating me with methotrexate and prednisone.

    Iíve changed doctors to university physicians now, both in rheumatology and neurology, and a myriad of testing later am taking oral cycloposphamide, prednisone and sulfa/TMP for the vasculitis and gabapentin for the neuropathy pain. My diagnosis now stands at ANCA-associated vasculitis, most likely WG, with mononeuritis multiplex.

    The neurologist and rheumatologist disagree on how aggressively this needs to be treated at this point but they are working closely together. My symptoms besides the neuropathy so far have been upper respiratory and constitutional--fatigue, breathlessness, etc.

    Iíve spent many hours each day researching online about Wegenerís and every symptom Iíve had to date. In fact as you might image, this site kept popping up in searches a fair amount of times. I am coping most days with bad days in between. You know how overwhelming the diagnosis of WG can seem.

    Most recurring depression has been due, though, to the neuropathy especially in my hands and my inability to do any of the things I love to do best--things using fine motor skills. I was devastated when I was told I'd never get back the feeling in my left hand, distressing news to a lifelong pianist.

    However, (and this is huge) I can also be a fighter and fortunately this has kicked in for me. Iíd liken it to an athlete who is told he will never run again. I was determined if it was humanly possible, that Iíd play piano again. Every day I exercise fine motor skills and have had more than minimal success to date. So in and through the lack of abilities Iíd so taken for granted, my life has purpose and drive that I wouldnít have expected to find through this.

    It does feel lonely at times and Iím so glad to be joining this group. So on to the battle ahead!

  2. #2
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi DesertRose, welcome. Where are you in Arizona? I lived in northern AZ for 11 yrs (10 in Flagstaff, 1 in Sedona) until 2 years ago when I moved to Maryland.

    Please check out this thread to get a Wegs specialist involved in your care (and really great advice from other members). Wegs is not a disease that can be treated properly by non-Wegs specialists.
    http://www.wegeners-granulomatosis.c...need-know.html

  3. #3
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,171
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    I had to look this up and post it here in case others share my question. I didn't know this was another term for the neuropathy that I got first from diabetes and then made worse by Wegener's disease.

    Mononeuritis multiplex is a form of damage to one or more peripheral nerves -- the nerves outside the brain and spinal cord. It is a group of symptoms (syndrome), not a disease.
    However, certain diseases can cause the injury or nerve damage that leads to the symptoms of mononeuritis multiplex. Common conditions include:


    Less common causes include:


    Welcome Rose

    Learning to cope with losses from this disease can be very challenging and even overwhelming at times. Sometimes it is best to be stubborn and not accept such limitations and then somehow you find a way to do them again. It is certainly a learning experience and we are happy to have you share with us.
    Last edited by drz; 03-09-2011 at 04:24 PM.

  4. #4
    DesertRose Guest

    Default

    Hi Sangye and thanks for the welcome.

    Wanted to say I have every confidence in my new rheumatologist. This is my second after a false start with another who too quickly overlooked complicated symptoms with a simple diagnosis. This sent me back to my internist with a plea for help. I'm glad she wasn't convinced in the simple diagnosis of severe RA either. It was actually a neurologist I saw next who suspected WG, ordered tests accordingly and sent me on to another UMC neurology prof who specialized in vasculitis (...although I actually credit my ophthalmologist treating uveitis for looking for underlying disease with being first to test for something more insidious). From there I was referred to my current rheumatologist, another professor who, by the way and to calm your anxieties, has plenty of experience in this area. I'm one to read all the professional journal articles, case and clinical studies, etc. and find his name amongst them. Most of all, he's a clinician, something I appreciate above all else.

    Years ago I found myself in another critical and rare condition (and probably immune-related, by the way), giving me plenty of experience with doctors at this level--more than I hoped would ever happen again. I'm not saying that flying to a major vasculitic center mightn't be an ideal situation, but advising it to everyone in every circumstance isn't necessarily in their best interest, especially the emotional component of adding doubt to their care. Right now my nerves are pretty raw, I know--it's all a bit much to take in--but I went back to him on Monday and was reassured that we are certainly in competent hands. Fortunately everything is stable test-wise and more importantly, I'm feeling much better, showing signs of improvement recently each week.

    Your case sounds far more complicated than mine so far, and I'm so glad you've had the resources to get the best care out there. Best wishes for your health in the days to come!

    (Oh, on a separate note: I really appreciated the thread on alternative therapies. You offered some very helpful information as were many of the other postings there. It answered questions I wasn't getting answered--especially regarding massage and supplements-- answers that I haven't run across yet in my searches. Thanks!)
    Last edited by DesertRose; 03-17-2011 at 08:20 AM.

  5. #5
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    It's great that you like your doc.

    I'm sorry you interpreted the thread in a negative way. The reason I try so hard to get people under the care (directly or indirectly) of a Wegs specialist is that I've been down the other roads before. Local docs, Mayo docs (but not at a vasculitis center), JHU docs who don't specialize in Wegs, etc.... I have loads of complications and permanent damage and have lost years, all because I didn't have a Wegs specialist.

    Dr Seo has told me every Weggie needs to be under the care of a Wegs specialist. He sees hundreds of Weggies from all over the world. I trust that opinion and feel obligated to share it.

    So many members of this group have gone to a vasculitis center and have said "Now I see what you guys meant." And, in the 2.5 yrs since I joined this group several members have died-- every single one because of receiving improper or inadequate care from a non-Wegs specialist. I hope I never again log on to a message that a member has died. I can't even tell you how deeply it has affected me. So I will risk offending someone or annoying them with my nagging and direct language. I'd rather have someone get mad at me but stay alive.

    Also, I did describe the option of getting a VF consultant involved instead of going to a center. I think it's amazingly generous of the VF docs to offer that service, especially at no charge.

    As far as having resources to get the best care, I am single and haven't been able to work in nearly 4 years. I live so far below the poverty level I can't even see it! (Is that it waaaay up there?) I sold almost everything I owned to move to Maryland. Even before Wegs I was always willing to do whatever it took to get to the best health care. Health is everything.

  6. #6
    DesertRose Guest

    Default

    With that, I see we'll have to agree to disagree, Sengye. My health will forever run a distant third place to my faith and my family. I know where your doctor is coming from, though. In my aforesaid severe illness over 25 years ago, my doctor (a noted pioneer in the field) believed the same about his specialty and for many years I preached that gospel to all willing and unwilling listeners. I've just learned to relax about it through that trial that nearly cost me my life. The one thing this conversation is teaching me is to chill about this newest trial--I realize I've been obsessing again (so good at it) about reading everything and anything I can get my hands on. It's time to put it aside and get on with the life that I do have. I think I'll go outside and garden for a while now that I'm able to again just a bit
    Again, the best of everything to you.

  7. #7
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    The thing about WG is that it's never really uncomplicated...just uncomplicated for the moment, or for the next five years or the next 20. I'm in a medically induced remission, and my case has been straightforward from the start and my disease responded to treatment in a classic better than textbook manner. That having been said, there is no indication that it will be like that in the future. This disease is not progressive but symptoms can come on suddenly and randomly, even when you are under the best care. That's why it's good to see people who can identify the random symptom before and to do that they have to have done a lot of work in this area.

    Let me give you a really random example. My ENT, who fixes saddle noses (when your bridge collapses due to WG; I have that), and he fixed one on a guy in his 20s who has had WG since he was in his teens. He decided to take cartilage out of his skiull, thinking it would be hidden by hair, wouldn't hurt very much (vs. ribs, which apparently really hurt)...he goes in and realizes that this guy has been under a decade of massive pred and there was no way he had enough existing cartilage. Had to close him up and do the surgery another time. Now, he always images the area that he will take cartilage from and does measurements. He also won't fix noses on people with active disease.

    On the other hand, almost any plastics ENT would/could fix my nose, but wouldn't nearly know/think of all this stuff. I met people at the Vasculitis Foundation Symposium who had their bridges rebuilt with fillers by very respectable ENTs. Does my doctor think this was wise (not necessarily). It gets done because it really bugs ENTs to see people with this deformity, almost as much as it bugs people to have it.

    However, I'll still take this over being sick.

  8. #8
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    DesertRose, I hope you continue getting better and everything works out for you. Meanwhile, I'll continue "preaching that gospel"-- a pretty funny image since I'm a Buddhist nun.

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •