Neurological involvement (along with everything else!)

[LauraNW]

They only looked at mom's neuro status because she had neuro signs, which apparently are unusual (?) in GPA but can happen. Mom's heart involvement was most likely secondary to the lung involvement. That was the only thing that her first cardiologist and I agreed upon (he was a jerk face and I am glad to be rid of him, new cardio is also my neighbor, poor guy!). But basically, control the signs, the heart will control itself and for the most part, it has behaved itself.

[Debbie C]

Thanks for the info Laura..I had to go to bed after I posted that last nite and just now read it. Went to bed with a headache and woke up with one now. I think I may call my dr. at the Cleveland Clinic and tell him whats going on so if there is anything he wants this neuro guy to do I can tell him, I have never seen him before for myself ( I took my mother there a couple times ) so I don't know if he knows anything asbout wg or not.
Don , I wish a had some Xanax ,my aniety pills (Klonopin ) aren't cutting it anymore ! But this coffee sure is tasting good this a.m.!

[mr.g]

I saw your reply to.... I had bad dizziness.... Check out -dizziness-vertigo-BPPV-caused-ear-rocks. I can control my dizziness, maybe you can also. Search for my thread on Dizziness by Mr.g and do the head turning exercises ???? EvG.

[Alysia]

Dear Laura.
It sounds so scary, what happened to your mom. my heart is going out to you and to her.
I'm not sure, but if the damage in the brain is the result of vasculitis, maybe this might mean that once the treatment is working, things will get better ? I hope so.
your mom is blessed to have you. how old is she ?
please continue to update.

[Alysia]

I am really starting to wonder if I am having the same problem. I go see a neurologist tomorrow. My head is killing me. I have such bad headaches and if I turn my head or look down, I get dizzy. And I have been having this pain in my chest and also I am getting hot flashes. I'll see what happens tomorrow then my ent Wed. and if not better calling CC. Some good news is my optomologist said my eyes were good today. 20/20 in one eye and 20/25 in the other. 2 out of 3.

Hi Debra, I'm glad your eyes are ok.
I'm sending you my praying. I hope it turns out to be nothing.
I know times in which I have headaches. it is very common. but sure you should check.
good luck & please update us.

[Debbie C]

Well I saw my neurologist today and that was a waste of time and money. He gave me a series of tests like touching my nose with my eyes closed, walking toe to heel ( which I kept falling over ) but he said I was fine. I told him I used to do yoga and was able to balance on 1 leg and now can't walk straight.He said yoga was very strenuous Yoga is very relaxing and good for you. Then he asked if I was stressed, depressed and slept well at night. And I said yes to everything.So he gave me a script for Zoloft...I forgot about Xanax, Don! But the worst was, I had taken in a copy of my cd of my brain scan to view and he didn't know how to adjust it to view on his machine !!!! He told me to fix it and call him back in when I got it up !!!!! I just looked at him and said "What..you are kidding me right ) He wasn't. So when he couldn't get it he gave me back the disc and told me 2 bring in the others I had that they may be better.THEN to top it off when I was getting ready to leave he had his nurse ask me about 10 questions on my sleeping patterns and wondered when I was coming in for a sleep ampnea test. They want me to come in there,sleep in the building at night ,hooked up to wires. NOT HAPPENING. I don't think I'll be going back to him. Tommorrow I go to the ent to get the results of my tests and see what he says...can't wait for this one !!!!

[Debbie C]

I saw your reply to.... I had bad dizziness.... Check out -dizziness-vertigo-BPPV-caused-ear-rocks. I can control my dizziness, maybe you can also. Search for my thread on Dizziness by Mr.g and do the head turning exercises ???? EvG.

Mr.g I looked for that thread and couldn't find it,I'll have to keep searching.

[mr.g]

Search "dizziness" There are 25 links on the page and my link is third from the bottom. If you like I will copy the info and send it to you. I hope the info is helpful. EvMr.g

[drz]

I saw your reply to.... I had bad dizziness.... Check out -dizziness-vertigo-BPPV-caused-ear-rocks. I can control my dizziness, maybe you can also. Search for my thread on Dizziness by Mr.g and do the head turning exercises ???? EvG.

I went to vestibular rehab for several weeks and found it very helpful in improving balance and keeping the world from moving around so much around me.

[firecracker]

I agree with the prednisone comment. Anything over 10mg.... and even after you taper lower than ten, it still takes some time to get your patience, sharpness, and "normal" feeling back. I'm finally off prednisone after 8 years and up to 40mg, and I just started feeling normal recently. Took being down to 10mgs for months before I stopped feeling so stupid, clumsy, and mad. Good luck with your mom. As bad as I was at times, my experience seems easy after reading your story.