User Tag List

Likes Likes:  0
Page 1 of 3 123 LastLast
Results 1 to 10 of 28

Thread: Any Wegs Brain Attacks?

  1. #1
    Join Date
    Jun 2014
    Location
    Asheville, NC
    Posts
    67
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Question Any Wegs Brain Attacks?

    Hey Weggers!

    If you're reading this that's a good sign. We are blessed. I'm currently very grateful to be able to see the page and think. Did not know my wegs could attack my brain. Lost vision, movement of my legs and am just getting out of the hospital. They had much difficulty finding wegs as the culprit. Without family MOTIVATION on the docs they might not have worked so hard, I fear, to find the elusive wegs diagnosis. Although they were wonderful and very helpful. It's just hard to spot and mine has been missed or minimized by doctors many times.

    QUESTION: Has anyone else had Wegeners Neuropathy? Central Nervous System Involvement? Brain Hemorrhage? Vasculitic Stroke? Major Nerve Pain probably caused by Vasculitic process?

    HISTORY:
    1998 Wegs Onset. Major nerve pain in lumbar, legs, feet. Lung, Sinus, Eye, Ear, Major Joint and muscle attacks. Hive of Bee sting sort of joint and muscle pain. No Insurance causing Misdiagnosis as Lyme Disease. 2000 Diagnosed by Rheumatologist. Pred / Mthrxt 3yrs. No full Remission. 14 YEAR LIFESTYLE CHANGE INSTEAD OF TREATMENT: Low inflammatory diet change, Zen Meditation, Increase Anabolic / Metabolic Rate managed symptoms but always sick, unable to work more than 2-5 hours per day if lucky (nausea, fatigue, sinus, eye and ear, lung, rash). 2010 Wegeners Neuropathy crippling back pain not clearly identified by docs as wegs at the hosp or at rheumatologist. No Wegs Treatment. 2012- Took cymbalta which triggered wegs. Increase in Fatigue, Lung, Sinus, Joint, Eye involvement. Loss of vision. Sudden Loss of Hearing. No treatment, all symptoms continue to escalate. 2014- Wegeners Intracranial Hemmorhage removed control of left leg. Hospital confused but after much family encouragement found a right frontal hemorrhagic stroke "likely" vasculitic process. Meaning short of a brain biopsy they added up 2+2 and got Wegeners attacking my CNS and probably previously my nerves in the lumbar sacral area back in 2010 and 1998.

    BOTTOM LINE: MOTIVATION to the doctors in front of us is my parting message. I've struggled with this and let them lead but I really need to have a written line of questions for them that I insist on answers for. Usually they say "I don't know" and I know I can't get surety. but there is almost always something more that we can do to test or treat. I owe this to my family.

  2. #2
    Join Date
    Jul 2012
    Posts
    44
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    My husband has neuropathy in his right foot - vasculitis caused. He also had a minor stroke - probably vasculitis related. Also had a third nerve paresis - perhaps caused by vasculitis. Now appears to have bursitis in his elbow - perhaps caused by a vasculitis lesion that hardened (on the tip of his elbow) and irritated the bursa - the hardened lesion finally fell off and now his elbow is draining bursa fluid. Has also had a drop foot which was caused by a pancreatic pseudo-cyst that was 9cm by 27cm and was pressing on his spinal column. The pseudo-cyst and acute pancreatitis attack were possibly caused ether by the Wegener's or by the treatment of it.

    Not sure if any of that is helpful or not. We have found that many of the doctors treating the ancillary symptoms are ill-equipped to treat a patient with Wegener's. He has a great rheumatologist and a great primary care physician - they have both come to rely upon me for direction with his disease. I can translate the symptoms and relate cause and effect - they may recommend treatment but it is always with our concurrence and there have been treatments that we have refused - and conversely demanded. The other doctors just have to put up with me putting in my two cents worth.

  3. #3
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,956
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, High Tide and Green Grass, and thanks for sharing your story. You have been through more and for a longer time with Wegs than I or many of us. We can all learn from each other's experiences. I've had pretty typical sinus, ear, and lung involvement and was on CTX and now MTX, along with pred, of course. It did take 2.5 years before things got bad enough for me to get a diagnosis. I've had some joint pain but not the kind of pain that you and some others have experienced. I don't have brain involvement that I know of but will see an eye doc this week because of some double vision that goes along with dizziness and occasional vertigo, and also see an ENT about the vertigo but nothing has been determined yet as to the cause. If I end up getting an MRI then I guess anything in the brain would show. I do, or did, have some neuropathy in my lower legs and feet, but most of this has gone away with treatment. I think this is fairly typical, though for some it doesn't seem to go away. Anyway, I'm glad you found us here on the forum and you will find a huge variety of Wegs cases being described, with currents of similarity running through them. It is a great group of people and I don't know what I'd have done without it these last three years.
    Anne, dx'ed April 2011

  4. #4
    Join Date
    Apr 2010
    Posts
    846
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome GGHT ,
    I have had brain a central nervous system involvement. On an MRI my brain lights up like the milky way with a cloud of small strokes that I have had. Some of them I remember as events where I was confused and had visual problems.
    l find it hard to tell the short story on this but the long story would require a book. I also have cerebellum involvement. Apparently there is not way to image this but it was a severe problem for me.
    I had 'attacks' that felt horrible and I could not describe. I ended up in a wheel chair and it took me a couple of years to be able to walk to my mail box and back. All the while the docs are pretty much just shrugging their shoulders and saying they have no treatment except to treat the Wg's and hope the other stuff gets better.
    Well, it has been about 14 years but I am pretty much normal again as far as being able to walk. 'Normal' people cannot seem to tell I have some deficit. I was very active before and I can still tell that I have some trouble- but I am not complaining . I can go for short hikes, garden, bicycle etc. and I have hopes of improving even more.
    Oh, and I had serious vision problems that the 'big giant heads' at my University hospital eye clinic had never seen before or even read about - lucky me.
    The good news is I have 100% recovery from that and only have twinges of vision trouble when I get sick with other things that aggravate my existing damage or a flare of the WG's . Other than that I am
    A- OK.

    Keep us informed here of how you are doing and what kind of things you are dealing with. Welcome to the party. I am glad you are out of the hospital and doing better. The brain has great plasticity and I would have high hopes of a great recovery for you . Be patient but also persistant. Some kind of Zen thing maybe... hahaha
    I too eat an anti inflammatory diet. I think these things help - certainly can't hurt.

  5. #5
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Green Grass. I'm sorry Wegs has really put you through it. I'm so glad your family advocated for you and helped 'motivate' the doctors on your behalf. I don't have brain involvement that I know of but am in the process of motivating docs to rule it out as I have very bad sub-occipital headaches and worsening brain fog. I'm curious about cymbalta triggering your Wegs. I've been on cymbalta for years for what my docs assumed was fibromyalgia pain. When I suggested to my GP that that was a misdiagnosis and I should stop the cymbalta she thought it wasn't a good idea to change too much at the same time... How do you know cymbalta made your Wegs worse or more active? Did stopping it help you?

    I hope you continue to feel better. Welcome to the family! I've been on the forum only about a month and it has become a lifeline. There is so much experience, wisdom and compassion to be found here and there's nothing quite like people who really understand...
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  6. #6
    Join Date
    Jun 2014
    Location
    Asheville, NC
    Posts
    67
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Girly3800 View Post
    My husband has neuropathy in his right foot - vasculitis caused. He also had a minor stroke - probably vasculitis related. Also had a third nerve paresis - perhaps caused by vasculitis. Now appears to have bursitis in his elbow - perhaps caused by a vasculitis lesion that hardened (on the tip of his elbow) and irritated the bursa - the hardened lesion finally fell off and now his elbow is draining bursa fluid. Has also had a drop foot which was caused by a pancreatic pseudo-cyst that was 9cm by 27cm and was pressing on his spinal column. The pseudo-cyst and acute pancreatitis attack were possibly caused ether by the Wegener's or by the treatment of it.

    Not sure if any of that is helpful or not. We have found that many of the doctors treating the ancillary symptoms are ill-equipped to treat a patient with Wegener's. He has a great rheumatologist and a great primary care physician - they have both come to rely upon me for direction with his disease. I can translate the symptoms and relate cause and effect - they may recommend treatment but it is always with our concurrence and there have been treatments that we have refused - and conversely demanded. The other doctors just have to put up with me putting in my two cents worth.
    Good stuff. Thanks. Very much inline with what my wife has had to do. I give the doctor a story. She gives the doctor clear Wegeners related symptom language. Her way is better. I will post how the tx goes for my brain involvement. The wegs polyneuritis stuff that I couldn't get correctly dx 14yrs ago has left permanent numbness and burning in the right leg, foot, hips. That's a clear case where, had I employed the, state clear wegener symptom method, I probably would have not had long term problems. I just didn't know...

  7. #7
    Join Date
    Jun 2014
    Location
    Asheville, NC
    Posts
    67
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by me2 View Post
    Welcome GGHT ,
    I have had brain a central nervous system involvement. On an MRI my brain lights up like the milky way with a cloud of small strokes that I have had. Some of them I remember as events where I was confused and had visual problems.
    l find it hard to tell the short story on this but the long story would require a book. I also have cerebellum involvement. Apparently there is not way to image this but it was a severe problem for me.
    I had 'attacks' that felt horrible and I could not describe. I ended up in a wheel chair and it took me a couple of years to be able to walk to my mail box and back. All the while the docs are pretty much just shrugging their shoulders and saying they have no treatment except to treat the Wg's and hope the other stuff gets better.
    Well, it has been about 14 years but I am pretty much normal again as far as being able to walk. 'Normal' people cannot seem to tell I have some deficit. I was very active before and I can still tell that I have some trouble- but I am not complaining . I can go for short hikes, garden, bicycle etc. and I have hopes of improving even more.
    Oh, and I had serious vision problems that the 'big giant heads' at my University hospital eye clinic had never seen before or even read about - lucky me.
    The good news is I have 100% recovery from that and only have twinges of vision trouble when I get sick with other things that aggravate my existing damage or a flare of the WG's . Other than that I am
    A- OK.

    Keep us informed here of how you are doing and what kind of things you are dealing with. Welcome to the party. I am glad you are out of the hospital and doing better. The brain has great plasticity and I would have high hopes of a great recovery for you . Be patient but also persistant. Some kind of Zen thing maybe... hahaha
    I too eat an anti inflammatory diet. I think these things help - certainly can't hurt.
    Wow. Thanks so much me2 for letting me know that history. We got started around the same time. You've given me much hope, more than that, touching. You have great strength of mind to endure that. Current suggested Tx plan: 3 - 1000 mg infusion of Solu Medrol over 3 days (made me psychotic). 60 mg pred. daily. As soon as bc/bs approves it, Rituxan 1000 mg infusion 2 weeks apart then maintenance drugs other than pred due to high infection rates. Probably imuran or such... I'm open to suggestions and will post responses to the meds as time goes on. If I don't stick to at least a basic high veggie diet I get real sick real fast.

    What did you end up using to tx yours?

    Best wishes,
    Tom

  8. #8
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,712
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi GG&HT and welcome.

    I can't say that I have any of those - well I sure hope not anyway........although sometimes the way my brain works, I wonder
    Like Anne, I just have the typical joint pain, sinus, eyes, ears etc.

    Gosh you have gone through so much already, but I'm glad you are now out of hospital.

    If you put a word - say, brain or even neuropathy, in the search bar, you will find many discussions on the topic.

    Best of wishes and gentle hugs to you
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  9. #9
    Join Date
    Apr 2010
    Posts
    846
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Tom,
    What treatment have I been on? The shorter list would be what haven't I been on. Seriously. I apologize that I don't have more time to elaborate this morning. I have an appointment (the good kind , not one of the endless doctors appointments of the past few years) I have to be off to but I will just tell you about where I am at right now. I have been up and down on prednisone for the past 14 years. In recent times I was up to 80 mg but I now seem to be holding up pretty well at 15mg- not too bad.
    I have taken lots of Cytoxan, IVIG, Methotrexate, Immuran, Myfortic, and more. I credit my slow rise to recovery to Rituxan. It did not work miracles for me right away. I am currently taking 1000mg every six months and this seems to be a good program for me.
    Of course I would hope to not take it all- but , it is working well for me and I'm not complaining.
    I too am sensitive to my diet and have to eat lots of veggies etc, or I get sick.
    I look forward to hearing how you are doing as time goes on Tom
    Thanks for sharing some of your story,
    Kirk
    Kirk

  10. #10
    Join Date
    Jun 2014
    Location
    Asheville, NC
    Posts
    67
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by LisaT View Post
    Welcome, Green Grass. I'm sorry Wegs has really put you through it. I'm so glad your family advocated for you and helped 'motivate' the doctors on your behalf. I don't have brain involvement that I know of but am in the process of motivating docs to rule it out as I have very bad sub-occipital headaches and worsening brain fog. I'm curious about cymbalta triggering your Wegs. I've been on cymbalta for years for what my docs assumed was fibromyalgia pain. When I suggested to my GP that that was a misdiagnosis and I should stop the cymbalta she thought it wasn't a good idea to change too much at the same time... How do you know cymbalta made your Wegs worse or more active? Did stopping it help you?

    I hope you continue to feel better. Welcome to the family! I've been on the forum only about a month and it has become a lifeline. There is so much experience, wisdom and compassion to be found here and there's nothing quite like people who really understand...
    Hi Lisa- Thanks. Yes. The Cymbalta was a major mistake for me and caused my wegeners to get beyond control. It was too toxic for me. To be fair, I have minimized my wegs symptoms and tried to use lifestyle changes to manage it myself. So cymbalta was a trigger not a cause.

    My sister took it for fybromyalgia after having salmonella. The GP thought since it worked for her it would probably work for me. It helped with anxiety and depression that came after pain meds for spinal cord injury (not wegs). But my immune system reacted to it. My wife, who God bless, is a recent RN, noted my symptom increases to me, much to my disillusionment and denial! Then I had the worst wegs attack in many years on sinus, eyes, lungs, ears and the GP definitively dx wegeners flare and sent that info to the Rheumatologist who said that the chemical make up of Cymbalta had "Immunologic" (guessing with bad memory) components. She said it was dangerous to the wegs and that Zoloft would be better, which it was but I couldn't take that stuff for long either and the wegs train had already got rolling.

    It's hard to dx. Fibro as I understand is neurologic...? I know when the nerve in my neck was pinched it was painful but didn't come with the vasculitis viper attack kind of feeling. I didn't think it was wegs related and still don't. The surgery fixed it and it went away. But other nerve pain, legs, hands, eyes, feet, toes, hips, lumbar; when these areas get attacked it "feels" like that vasculitis viper feeling systemically. It's not very scientific but has come to be reliable for me. I discovered this in silent zen sesshins and use it as my guide to increase mild exercise or drink more green, cut out corn syrup, food chemicals, sugar, dairy or whatnot at various times. When I get that wegs attack sense, I report it to my wife, who translates my gooblygock into clearly stated wegeners related symptoms.

    Hope this helps. I love this forum. I'm not sure I will be able to come back for a while but will post how my tx responses are as soon as I can.

    Best wishes,
    Tom

Page 1 of 3 123 LastLast

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
  •