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Thread: Any Wegs Brain Attacks?

  1. #11
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    Welcome to our family Tom I admit that your story sounds scary, but you are such a trooper, dealing with s much though times, with so much courage. you give us inspiration
    I hope that the worse is over, and that from now on, things will be better for you. anyway, you have us with you, if and whenever you will feel like.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #12
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    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 Kirk, I didnt know that you have being through all this. it makes me sad and amazed and relieved that you had recovered. you give us lots of hope. thanks for sharing
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #13
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    Quote Originally Posted by Alysia View Post
    wow Kirk, I didnt know that you have being through all this. it makes me sad and amazed and relieved that you had recovered. you give us lots of hope. thanks for sharing
    I also didn't know you had been through all that, Kirk.... it IS getting to be like what haven't you been through. I was interested in your description of the MRI lighting up your brain. It is possible I will get one if they don't figure out what is going on with my dizziness and double vision..... maybe it will show some interesting stuff as well. I guess I would not be too surprised to find I'd had some small strokes, although the prospect of that is a little scary. Anyway, it's true you are an inspiration to us, the way you hang in there with everything that comes your way. I hope the progress with the RTX continues so that you can truly come "out of the woods" .
    Anne, dx'ed April 2011

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    Yeap! I have brain involvement. Technically, I have Granulomatosous Hypophysitis due to Granulomatosis with Pollyangiitis. What happened is that wegs encapsolized my pituitary gland, pituitary stock, and hypothalamus. The net result was a total collapse of my endocrine system. You can read more about it in "my story" below in my sig line. Its a bit of a PITA to lose so much at once, but, after 4 years, I'm getting used to it and feeling pretty good.
    Last edited by vdub; 06-17-2014 at 08:53 PM.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Wegs made my neuropathy worse. I had it already due to years of diabetes. My joint pain before the diagnosis of Wegs also resulted in me being treated twice and tested for Lymes disease which I didn't have according to the tests. I attributed my cognitive decline to hypoglycemic reactions, chemo brain from the RTX and CTX, a couple weeks of intubation during early treatment, and my pred meds which impairs concentration. Some times these side effects endure even after the meds are discontinued, but who knows what other damage has been done to my body by the Wicked Granny and the treatment for it.
    Knowledge is power! Wisdom is using it to make good decisions!

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    All this site makes for interesting reading.... yes I have got brain involvement.
    I retired in September 2010. I had 6 months of normal health. April 2011... Sudden deafness right ear. Accumulating in fierce headaches. I was taking some strong prescribed pain relief but it was just reducing the pain. My GP quickly diagnosed Cranial Arteritis and put me on steroids. Brilliant. No pain. I found a consultant dealing with Arteritis and got a referral to him. Confirmed diagnosis as Arteritis/Vasculitis. Upped the steroids and arranged chemo... 2 courses Cyclophosphamide backed up by Methotrexate.
    Move on... over the next 24 months....Lost my voice and had difficulty swallowing... endoscope showed paralysis of right vocal cord. Numerous tests by neurologist showed that the brain lining was thickening and compressing the cranial nerves on the right side..... resulting in problems with hearing, sight, sinuses, crooked tongue, taste, swallowing, speech, right arm movement and sundry other things. Diagnosed as Neuro-Sarcoid/Vasculitis. No evidence of stroke. August 2013- Diagnosis changed to include Wegener's... Dec 2013.... trouble breathing and beginning to have a pronounced cough. Chemo changed to Rituximab.... still with Methotrexate. Continued tests showed among other things, a narrowing of the trachea. Steroids upped to 40mg again.... Jan/Feb 2014- lung involvement. Wheezing/ruttling.... and a disgusting cough. Steroids reducing.... two instances of lung infections. Steroids down to 12.5mg now and beginning to feel pain in my leg joints and muscles, desperately fatigued, but I am feeling better in myself. I can't remember the amount of scans I have had, CT, MRI, PET, x-rays, scopes up and down, biopsies, and general proddings and pokings. This all sounds terrible, but if you are reading this then you are aware of the symptoms of Wegener's. I am very much an optimist, but at times I have been pulled down by these ongoing processes, wondering if there ever is going to be an end to it, and when can I get my life back. Then I read of the sufferings of other people on this forum and realise that I have got it fairly mild.
    Present day.... I have lost the hearing in my right ear and have vastly reduced hearing in my left ear. I have glaucoma in both eyes and the beginning of cataracts due to high steroid usage.I seem to pick up any infection going and probably will continue to do so until my natural immune system kicks back in and the steroids get below 7.5mg. My feet feel as if they belong to someone else.... on the verge of pins and needles and cramp all the time, making it painful to walk. And ongoing difficulties with breathing and coughing. No change with right vocal cord which makes it difficult to cough and sneeze. Cannot shout at all and sometimes my voice goes completely.

    Sorry for this long tirade. It's comforting knowing that the people that read this will understand what I am talking about.
    LFU2

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    Welcome, ifu2, and thanks for sharing your unusual story on here. I'm glad you feel your case is mild compared to others, but brain involvement sounds scary to me. And the loss of vocal chord function and other troubling symptoms sound hard to deal with. But I'm glad you are maintaining your optimism and things are fairly well under control, despite the limitations. I wouldn't call it a tirade, but they are welcome on here, and I'm glad that we can be of comfort to you.
    Anne, dx'ed April 2011

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    It is definitely unsettling when it attacks your brain. I haven't heard of too many brain transplants, but some people have suggestrd I should get one. :-)

    Sounds like your wegs went far further than just your brain. I have always said that as bad I might have it, I don't have to look very far to find someone worse off.

    Welcome to our little group!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  9. #19
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    Quote Originally Posted by lfu2 View Post
    All this site makes for interesting reading.... yes I have got brain involvement.
    I retired in September 2010. I had 6 months of normal health. April 2011... Sudden deafness right ear. Accumulating in fierce headaches. I was taking some strong prescribed pain relief but it was just reducing the pain. My GP quickly diagnosed Cranial Arteritis and put me on steroids. Brilliant. No pain. I found a consultant dealing with Arteritis and got a referral to him. Confirmed diagnosis as Arteritis/Vasculitis. Upped the steroids and arranged chemo... 2 courses Cyclophosphamide backed up by Methotrexate.
    Move on... over the next 24 months....Lost my voice and had difficulty swallowing... endoscope showed paralysis of right vocal cord. Numerous tests by neurologist showed that the brain lining was thickening and compressing the cranial nerves on the right side..... resulting in problems with hearing, sight, sinuses, crooked tongue, taste, swallowing, speech, right arm movement and sundry other things. Diagnosed as Neuro-Sarcoid/Vasculitis. No evidence of stroke. August 2013- Diagnosis changed to include Wegener's... Dec 2013.... trouble breathing and beginning to have a pronounced cough. Chemo changed to Rituximab.... still with Methotrexate. Continued tests showed among other things, a narrowing of the trachea. Steroids upped to 40mg again.... Jan/Feb 2014- lung involvement. Wheezing/ruttling.... and a disgusting cough. Steroids reducing.... two instances of lung infections. Steroids down to 12.5mg now and beginning to feel pain in my leg joints and muscles, desperately fatigued, but I am feeling better in myself. I can't remember the amount of scans I have had, CT, MRI, PET, x-rays, scopes up and down, biopsies, and general proddings and pokings. This all sounds terrible, but if you are reading this then you are aware of the symptoms of Wegener's. I am very much an optimist, but at times I have been pulled down by these ongoing processes, wondering if there ever is going to be an end to it, and when can I get my life back. Then I read of the sufferings of other people on this forum and realise that I have got it fairly mild.
    Present day.... I have lost the hearing in my right ear and have vastly reduced hearing in my left ear. I have glaucoma in both eyes and the beginning of cataracts due to high steroid usage.I seem to pick up any infection going and probably will continue to do so until my natural immune system kicks back in and the steroids get below 7.5mg. My feet feel as if they belong to someone else.... on the verge of pins and needles and cramp all the time, making it painful to walk. And ongoing difficulties with breathing and coughing. No change with right vocal cord which makes it difficult to cough and sneeze. Cannot shout at all and sometimes my voice goes completely.

    Sorry for this long tirade. It's comforting knowing that the people that read this will understand what I am talking about.
    LFU2
    welcome what a nightmare I am so sorry for you. good that you find us, so we can hold your hands at those tough times. thanks for sharing your story. please update us how are you.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #20
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    Hi Lfu2

    Welcome to the forum, yes it certainly does sound like you have been in a nightmare.
    I'm so glad you are here to be able to share with us
    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

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