Any Wegs Brain Attacks?

[Green Grass & High Tides]

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.

[Girly3800]

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.

[annekat]

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.

[me2]

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.

[LisaT]

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...

[Green Grass & High Tides]

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...

[Green Grass & High Tides]

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

[mishb]

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 :tongue1:
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

[me2]

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

[Green Grass & High Tides]

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

[Alysia]

Welcome to our family Tom :hug1: 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 :thumbup:
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]

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 :hug1:

[annekat]

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 :hug1: 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" .

[vdub]

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.

[drz]

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.

[lfu2]

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

[annekat]

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.

[vdub]

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!

[Alysia]

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 :hug1:what a nightmare :w00t: :crying: 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.

[mishb]

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

[PJ2010]

Hi.

Back when my WG was most active and was on all the meds, if there was too much activity around me or was under any stress I sort of went into a shutdown mode. I would just phase out. Before this I noticed my hands would shake so badly that I couldn't write properly.

Others around me were very aware of these episodes which happened frequently at work.

These events lasted for probably 15 minutes or so. At their worst I also had trouble forming words. It was so distressing.

Ive never reported these events to the doctors. There was so many other things happening with my health, it didn't really rate as a priority.

Currently I'm in remission they say but these shaky blank moments are still with me. It seems when I'm stressed I feel very shaky and I loose concentration. A friend of mine whom has a very wide knowledge of illnesses in general feels it may be damage to the central nervous system caused by the wegener's.

I think he is right. Does anyone else suffer this? Or maybe can someone shed some light on it?

[Dirty Don]

It's possible that the WGs dog got your central nervous system...it is more likely you are stressed, have a low resistance to anxiety, and, perhaps, could look at that side of it. WGs is its own best perpetuator of the disease in that it presents in so many ways it becomes very difficult to tell anything without bloods and such. As it turned out, panic and anxiety were symptomatic warnings of my WG coming on...weird, but seems to be true in that tho I'm still on Lexapro I have not had one anxiety attack since the dx era. Best to you.

[PJ2010]

Don, I understand what your saying. I also at the time was on Lexapro I'm sure I would have been stressed at the time. I'm not on meds now. It is possible I may be still under stress now.

In the past I have had issues relating to stress, but I've never experienced these shakes or this phasing out stuff.

The other thought I've had is, is this damage caused by Prednisolone? You may remember when I was on pred I suffered multiple episodes of psychosis and was hospitalised as a result.

Ive heard some people that use speed or marihuana can experience psychosis and in some cases the psychotic symptoms are with them for life. Maybe the Prednisolone can have a similar affect? Maybe these events are minor psychotic events?

Sorry for the questions that may never have an answer. :)

[drz]

Ive heard some people that use speed or marihuana can experience psychosis and in some cases the psychotic symptoms are with them for life. Maybe the Prednisolone can have a similar affect? Maybe these events are minor psychotic events?

Sorry for the questions that may never have an answer. :)

I have read that some of the concentration problems from Pred can persist long term and some times there are residual effects of psychotic episodes that persist. A good mental health expert like a clinical psychologist should be able to assess that for you and your apparent level of stress now, and then tell you more about what might be going on for you. Counseling for the stress of dealing with the Wegs diagnosis is also usually a good idea too as many of us found it helpful.

[gilders]

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

No need for the apology. Us Yorkshire folk are tough 'uns, but this illness really does try your patience!:predrage:

You'll have to stick a pin in the weggie forum members map (link near top of this page), you'll be my closest neighbour. Plus I'm in Leeds about every other week to watch the mighty (well not so mighty at the moment) Whites. Perhaps this forum should take on Leeds United's Marching On Together statement!

[me2]

Hello Brain Club,
I have something interesting to report. I saw my Rheumy a few weeks ago and was having problems with my 'brain' that are still not explained . I could tell he was not really understanding how serious my problem is so I took a chance and showed some emotion. I cried. So, he asked me if I was maybe just having 'emotional problems'.
Inwardly I sighed.
Like others here , I've heard this kind of thing before. But , I've come to trust this doctor so I patiently and calmly told him I did not think so. I told him that I know he was not my doctor when I originally had extreme symptoms and problems. I suggested he talk to the doctor who I was seeing at the time if he had some doubts that I had a physical problem. I told him to talk to the doctor who saw me when I returned from China in a wheel chair and was admitted to the hospital through the ER and ask him if he thinks it is emotional problems.

Well, he took a few seconds to ponder that and I could see him mentally switch gears. He asked if I ever had a 'Black Blood MRI'. I said I was sure I had not because I had never even heard of one. I asked
'Did they have this type of imaging 14 years ago when I got sick?'
He said, 'No'
I said, 'Well, that would explain why I have not had it'

So, to try and make this story short- I am getting a Black Blood MRI on September 9. This test shows blood vessel walls in exceptional detail. Previous tests show the entire blood vessel but not the blood vessel wall. I think they call this 'black blood' because the image blanks out the blood and just shows the rest of the structures. I can't find any easy to read info on this imaging technique , I think it is relatively new.
And, my insurance company called me and told me they will cover it.

So, after all these years I may finally get an image that lets the doc see what is causing me such incredible misery at times. It might even be useful for treatment- I don't know.
After I get the test I will report back here the findings.

[Green Grass & High Tides]

Hey Brain Club! 10 month update, April 2015. Still alive and well! Perhaps not as active as I'd like but able to walk and get around and spend time with family and friends.

TREATMENTS: Solu Medrol Pulse 1 g/d x 3. Prednisone, Rituxan (4 so far), imuran, meditation, rest, careful diet, tapered exercise regimen.
CURRENT SYMPTOMS: Gut, Eyes, Nerves in Leg and Back, Lumbosacral, Ear, Sinus, Lung, Neurological Fatigue and wegs fatigue, Muscle Weakness.
RESOLVED SYMPTOMS: Brain, Nodules, Joints,

Brain recovery has been decent. Regained ability to walk but not total control. Have constant headache but its not a migraine. Pulse steroid therapy made me nearly psychotic and ruined my ability to take pred without getting sick with major anxiety and aggression. Had to taper off pred 1 mg at a time, very slowly, rebounding along the way until finally, today is 8 days off pred!!! So happy about that, but am on the verge of losing my hearing in the left ear and have wegs in the nerves causing burning that keeps me up at night. So, not a remission yet. Have been charting my symptoms daily which I learned here and is very helpful.

In retrospect, the things that helped the most over the past 10 months have been, arghh, the steroids, rest, diet, exercise and charting. I'm not sure that rituxan has done anything. Imuran made me worse, guts bled, but they bled after rituxan too... Elliptical machine, light weights, stretching helps a lot. Have a great business but can't work. It'll definitely kill me if I get that train rolling. Hard to accept that one but it's important. Feel like God has been with me every step of this journey and so am trying to trust that financially. Hope you all are enjoying the spring! T

[vdub]

Sounds great that you are well on your way to our sub-par normal!


Have constant headache but its not a migraine.
I have those, too. Its what started me on my way to a regimen of daily pain meds. I really know when I forget to take my afternoon dose. Like you, in addition to the headaches, I have a lot of general pain, with my legs being the worst. Luckily, other than the secondary issues with my endocrine system, nothing else seems to be adversely affected.

This winter has been "not so good", but I am coming up to my 5 year anniversary point. I had my brain surgery on 21.Apr.2010. According to the internet, I am supposed to be 80% dead. Ya, just gotta love the internet.... :-)