Wegs in the brain

[newweg]

anyone have it or know of anyone?

[Al]

anyone have it or know of anyone?
Yes, there are a few members with brain involvement. It is not common; neither is it unheard of. And it is hard to treat and requires pretty aggressive action. I strongly advise getting in with an established vasculitis program immediately. In your other thread I have given you a couple of names.

Al

[pberggren1]

I think the new member, Zoe, has brain involvement.

[newweg]

Docs are ignoring brain, just saying meds will fix that too, but if it grows more on my pons, I am done...not much room there. Pons is a brain stem, controls heart, breathing, all involuntary good stuff.

[LisaMarie]

My bio dad called to let me know his friend s wife has WG with brain involvement...she is getting aggressive treatment..so please insist they do something

[newweg]

Can you find out where and what treatment? Need to light fire around here. When I saw neurologist I looked fin, back in Dec. He said, referring to my eye.. is this the worst it gets. Geez, I told him this is the best!

[LisaMarie]

i know they live in Indiana...i will try to get a hold of him and get you some info tomorrow...God Speed

[Al]

Susan--how were the lesions identified? MRI? Who interpreted the scans? It seems to me that any competent neurologist would want to get to the bottom of this fast.

Al

[newweg]

MRI. The neurologist ordered with contrast to rule out cancer, not cancer. Then I had total cardiac work up to rule out stroke. The neurologist at Jefferson(suppose to be best) said he does not really know what it is, the pons lesion is their only real concern, if it grows much more all my involuntary muscles will got wacko...heart, breathing. All he did say many times is inoperable and no treatment. The rhumy does not agree but hesitant to speak up, he said meds will treat brain also

[Al]

MRI. The neurologist ordered with contrast to rule out cancer, not cancer. Then I had total cardiac work up to rule out stroke. The neurologist at Jefferson(suppose to be best) said he does not really know what it is, the pons lesion is their only real concern, if it grows much more all my involuntary muscles will got wacko...heart, breathing. All he did say many times is inoperable and no treatment. The rhumy does not agree but hesitant to speak up, he said meds will treat brain alsoWell, Susan, the meds are what we have to work with at the moment. If vasculitis is at the root of the lesions, surgery won't help much. And, anyway, you don't really want to go cutting around much in the brain stem. Did the neurologist know about the WG?

Al

[newweg]

Yes, he does. I see him the end of May for my regular follow up. I am going to be a bit pushy. Drugs is only way. My concern is, as much as I do not want this. Perhaps drugs need to be 'pumped up' due to brain..The rhumy says he is not a neuro and the neuro says he is not a rhumy. I need someone familiar with wegs to co-ordinate but have found no internist yet.

[newweg]

Also, as I was being tested for my symptoms, they thought the lesions were an 'incidental finding', neuro said I have no symptoms from any brain lesions yet.

[Sangye]

Docs are ignoring brain, just saying meds will fix that too, but if it grows more on my pons, I am done...not much room there. Pons is a brain stem, controls heart, breathing, all involuntary good stuff.
That just seems insane to me. CNS involvement is extremely difficult to treat and has to be dealt with using the most powerful drugs. You've got to get to a Wegs specialist.

[LisaMarie]

ok my bio dad has some info for me ..I will call him and post it tonight...I am suppose to be able to speak with the person that has it in her brain and discuss her treatment...i will try to introduce here to this support group...wish me luck

[me2]

Also, as I was being tested for my symptoms, they thought the lesions were an 'incidental finding', neuro said I have no symptoms from any brain lesions yet.

Hello,
I've read this thread several times now and I'm still confused. Maybe you have talked about everything elsewhere on the site and I haven't read it, if so I'm sorry if I'm asking questions already answered.

If you have no symptoms from any brain lesions then why was an expensive MRI ordered. You say you were being tested for your symptoms- what are your symptoms that caused them to look at your brain and find 'incidental' lesions?

A few years ago I suffered terribly from CNS involvement. My brain MRI showed that I have had lots of small strokes. I remember a couple of them as weird days I went through. The brain has remarkable recovery systems.

What was of more concern was that WG ( or something, no definative diagnosis was made) was affecting my cerebellum. It was a horrible sensation. My ability to walk was drastically affected. My eye 'movements' were affected. The entire optho staff at the University hospital I go to had never seen someone with the problem I had. It would take me a couple of pages to describe what this it was like and you still wouldn't get it. Docs were stumped as I struggled to tell them what was wrong.
With so few people having this type of problem the language doesn't really do justice.

This is one chapter of my past twelve years of struggleing with this relapse. Prior to that I had twenty years of remission from having WG almost kill me. I returned to pretty good health- no meds for the twenty years. Now , I have taken every med known to WG treatment and then some. The last few years are a blur and I wish I had something more helpful to say about the brain involvement.

My first response is to agree with Sangye that THE most important thing is to find a WG specialist. You have a very rare problem with a very rare disease. If I remember right CNS involvement happens in only something like 7% of WG patients. Lucky us. I AM lucky, I'm still here. It took a couple of years but I recovered my ability to walk normally. No one knew if I would.

As I remember there is no different or direct treatment for CNS involvement so what your docs are saying sounds correct. However, if it were me , I would want one of the top doctors in the world telling me that not my local guy. CNS trouble goes bad too quickly and is too unpredictable and incredibly serious. If it were me , and I found a WG specialist to work with I would also have them call to consult with one of the consultants from the Vasculitis Foundation.

Even in my current condition, of having several years with no new CNS involvement I ask my doc from time to time to consult with a specialist in Cleveland. This is not a time to be shy or worry about hurting the docs feelings.

I hope knowing some of my story propels you to get immediate , high quality attention and that it gives you hope , that with swift treatment you can get back to doing well.
Kirk

[newweg]

That is what I read and told them. I go to Jefferson , they are suppose to be best in country for brain. I never heard back from Wegeners Specialist and appt is July.
I was unable to move appt, I will call again..

[newweg]

Symptoms were right eye tearing, swollen and red, bad! Left eye alittle. Right sinus only bad. Whites of eyes blood red like I was drunk or doing drugs. Fingers and feet numb and tingles. Hips stiff after sitting and gate would be off. Fingers in left hand would get weak, poor fine motor control that would come and go, head felt like water in it. Blood pressure went from 60/40 to 169/99 and everywhere in between in one day, right side of face slight droop, right cheek puffy. Crusty around eyes like pink eye. Confusion. All this would come and go. On and off steroids and antibiotics for this allergy/sinus thing.
Got 3 severe headaches left forehead woke me up one time, nothing took pain away, same week driving sudden severe headache so bad I drove right to ER, my entire rt side of face swollen, eye tearing and tears burning my skin. Treated me for severe sinus infection and sent me to neurologist for headaches. When this all happened extreme fatigue, my entire face changes, did not look like me. MRI showed lesion on pons and smaller ones in deep white matter. Neurologist said if lesions causing mr problems, I would not be able to walk. Thought 2 separate issues. Told to rule out...cancer, stroke, I did, had all tests. ENT send me to rhumy when he saw ulcer in rt septum. Rhumy diagnosed me and started meds.

[newweg]

Please let me know where she is from and who her doctor was,

[newweg]

can you get me information on doctor treating this?

[newweg]

My husband left me same week diagnosed. Cleveland does not take my insurance! If anyone can give me a wegs specialist for brain involvement please do. Yes it is rare,
I dont know where to go.

[me2]

So much of this sounds so familiar. I too have had the horrible sinus pain, the red eyes with crusting, the confusion, fatigue, useless trips to the ER, and the pain. The loss of relationships. I'm sorry you have suffered this too.

The consultants for the Vasculitis Foundation are listed on their web site:
Vasculitis Foundation Medical Consultants | Vasculitis Foundation (http://www.vasculitisfoundation.org/vasculitismedicalconsultants)

Your Rheumy can consult with any one of them about your situation over the phone for free. Dr Langford is a favorite of some here including me. I travelled to Cleveland to see her and she has come and spoke at the Medical Center in Seattle where I am seen.

I would feel comfortable with any of the others though if she were not available.
It sounds like you are doing 'relatively' well right now (and that IS good) but if you are not on the most agressive and appropriate treatment program I would be afraid that could change.

I was on only prednisone thinking I was headed for remission when my brain stuff started. My doc didn't listen to me and I ended up in the ER several times with the disease hitting me harder each time until it hit so hard I couldn't walk and was in the hospital for over a week. Even then I had a hard time getting what I now know to be proper treatment because I didn't have a Rhuemy expert on WG looking out for me. This to me is the key.

Others see partial pictures of what WG does and maybe have opinions on how to treat or not to treat (like a Neurologist) but it takes an experienced Rheumy to be looking over all the issues and treatments together and making sure you are covering all the bases and doing the most you can. You may be doing that , I don't know , I can't find your other posts.
Keep us posted here. There are many wise souls who are willing to help any way they can.

PS - I don't know if there is a WG specialist for brain involvement only. I would be surprised if there were given the extremely small number of us with the problem. I would feel good having first an expert Rhuemy, then a good neurologist who can work with the Rheumy. As far as I know it is correct to be treating the disease 'in general' when you 'specifically' have brain involvement. I don't know of there being anything specifically different to do for the brain EXCEPT that it should be dealt with most effectively immediately, not a month later say if you were just having some minor sinus problems.

[newweg]

Thank you, I am printing out list. So my rhumy can call any doctor and he will give opinion on my treatment>

[newweg]

Merkel is on list, I have appointment July, he is now in PA at HUP. I am trying to get earlier appt but he does research and sees patients once a week. Maybe he would be good one for my rhumy to talk to!

[me2]

Merkel is fantastic. Also known in these circles for his great sense of humor. I heard him speak at a Vasculitis symposium and was very impressed as well as entertained.

[newweg]

Good, I am already scheduled, he takes my insurance, I did email him last week during a flare up and requested I see him sooner but got no response, he could be away. I will call his office Monday. If he is familiar with brain involvement, maybe I already found the right person to guide and possibly treat me!

[newweg]

Btw- things got stalled in my care when my husband of 19 years left within a week of my lesion diagnosis and left me with no money, 2 distraught teenager and attempted to remove me from his health insurance and filed for divorce. Also, told me to live off credit cards! So I have had quite a bit on my plate.

[me2]

You will be in world class hands with Dr Merkel. I hope you can wiggle into his schedule soon. It is a draw back that the better the doctors we see the harder it can get to be seen soon. Still, when in your circumstance you must become world class insisitant - its the only way they can know you need to be seen urgently.

I myself am a bit shy and I've had to get over it to stay alive. I found that just quietly telling them I needed to be seen when I KNEW I was in serious trouble and needed to be seen soon, wasn't enough. I've learned to be aggressive to advocate for the best and most appropriate treatment when necessary.

I am lucky to have found a medical 'home' now and the nurse who is the 'firewall' for the doc I see has come to know and respect me that when I tell her "I know the doc's schedule is full and his appointments are two months out, my situation can't wait that long" - she goes into action to get me seen sooner , even if by someone else in the clinic. She has said to me that she knows I don't complain unless its serious.

I don't like that I had to fight at times to get seen but it has gotten easier.
And you have all these extra things dumped on your plate at the same time. Stress is what you don't need and life has handed it to you anyway. I'm so sorry you have had all of this put on you at the same time.
At least you can come here to the 'Wegener's Lounge' and hang out with us who have had similar plates served up to us.

It reminds me of a favorite saying that actually comes from a sci fi book called Callahan's Crosstime Saloon. People from all over the Galaxy pass through this place and the motto is "Shared pain is decreased and shared joy is increased."
Callahan would like this place.

[pberggren1]

newweg, It just makes me cry that your husband would abandon you and your kids like that so fast.

[Al]

Btw- things got stalled in my care when my husband of 19 years left within a week of my lesion diagnosis and left me with no money, 2 distraught teenager and attempted to remove me from his health insurance and filed for divorce. Also, told me to live off credit cards! So I have had quite a bit on my plate.Yes, Susan, as Phil says, this stinks. And it is all the more reason to get really feisty.

Al

[newweg]

Thank you Phil and Al. I must say it is unsettling to know the truth, but I have learned a lot and focus on my kids and survival. You know, either you have 'character' or you don't. It really is the things we do and the decisions we make in a time of crisis or panic that really defines who we are.

[newweg]

Phil,
Thank you for your kindness.

[pberggren1]

Phil,
Thank you for your kindness.

You are most welcome. It is my duty.

[Al]

You are most welcome. It is my duty.Susan, methinks that Phil, when he talks about obligation, is just covering up--he really is a big pussycat.

Al

[pberggren1]

I do love cats...

[Psyborg]

Newweg,

Sorry to hear what you've gone through. Glad you could find us and hope that you'll find the answers and help you need here.

[newweg]

Thank you, I have found more information, compassion and just plain good people here! What a much needed support!!!:thumbsup: