Neurological involvement (along with everything else!)

[LauraNW]

So really, to make a long story short (not that I think it is possible with GPA), but my mother was diagnosed with Wegener's in February 2013. It was a long, awful experience. She started with the sinus problems and hearing loss, has lung involvement, kidney failure (actually after she was diagnosed and already on Cytoxan, go figure), cardiology changes (atrial fibrillation), and then to top it all off, neurological involvement (combination of cerebritis and PRES). She also had some blood clot issues during treatment and the treatment for that caused a worsening of the neuro issues and precipitated a bleed and seizure activity. All together, she was in the hospital (3 different ones) for 52 days straight.

She has completed Cytoxan treatments and is currently on Imuran, pred, metoprolol, Keppra, zemplar, Vit D, thyroid supplement, and a multi vitamin. Other than her BUN/Creat remaining elevated, all of her bloodwork and markers are normal. Other than just physical weakness and stamina issues, she really isn't limited much.

So today, she had a follow up with the neurologist after having a recent MRI and EEG. He thinks there is some permanent damage in several small areas of her brain from the vasculitis (I was not at the appt and so I do not know for sure what he said). I'm not all that impressed with her neurologist, but it is what it is and since there is no further seizure activity or worsening neuro signs, I'm content to not travel anywhere else for this aspect. We do love our rheumatologist, nephrologists, and pulmonologists, so since he is the least involved anyway, he'll do.

I have noticed that she is not mentally as sharp as she was this time last year and she's slower on recall, etc. She is also more forgetful (than normal!). I contribute these things to the seizure/hemorrhage activity in March as well as the disease/meds in general. To some extent her general demeanor has changed. She is definitely grumpier, but also MUCH less tolerant/patient. But it is hard for me to describe and maybe I am more critical because I am her daughter.

So I am wondering if anyone has any suggestions on how to help improve her mental function?? Is there anything that someone else has done to help get back to full recovery? She does read a lot, does crosswords puzzles and knits/crochets. She is currently trying to start exercising more (slow 15-20 minute walks at a local (flat terrain) park.

I have learned a lot from these boards and also found comfort knowing that we seem to be on the right track medically by reading other's treatment plans. Thanks so much for all of your insights!

Laura

[Dirty Don]

Welcome to you both Laura...good of you to get on here for your mom...good place to be, friendly and knowledgeable! It appears that her docs have everything in hand. I can't say much about her other issues, but the grumpiness and not being quite sharp is most likely the pred, depending on the dose. Anything over 10mgs usually has some side effects such as you mention. Exercise, a good diet, and a lot of patience on everyone's part is needed. She is lucky you're there...remember that when mom nails you for something dumb! Best of luck.

[drz]

Brain training exercises that are available on internet programs can be helpful. I did those several times a week at our senior center and my performance actually improved after my Wegs illness with lot of meds and drug induced coma. This really surprised me and the neuropsychologist who tested me. ARRP has some free ones on their site and others are available by subscription on internet.

[DJS]

My wife experienced some of these brain issues and her rheumie told her that it was chemo brain. Lots of her patients experienced it but it would go away when the drugs were done. She is walking about 2miles a day with our dog and is getting less tired. She sleeps like a lumber jack.

[pberggren1]

We are all here for you Laura.....that is our job. This is one big family.

[LauraNW]

Thanks for the words of encouragement! I saw on another thread that patience is one of the hardest parts of this disease. Mom has never been sick for more than 2-3 days in her whole life, so dealing with a chronic disease is frustrating for all of us.

She is down to 10mg pred once daily for 6 weeks (this is the beginning of week 3), then we hope to taper to 5mg. She is on a limited dose of Imuran (50mg daily) because of her kidney function. Hopefully decreasing the pred will help, I had not considered that.

We will continue with the brain games as well. She did have some cognitive worksheets from when she did speech therapy after the seizure episode, maybe we can get some more of those too. She has been knitting since she was 5 (60+ years), and after all the neuro stuff, she basically now has to really concentrate, whereas before it was second nature. So I think the knitting/crochet has helped as well.

I am so thankful that I found this forum, even though I don't post much, I have read extensively on here. Her rheumatologist is my next door neighbor (ha, poor guy!), so between him and all of you, I feel so much more informed. It has helped to read so many stories similar to hers and we sound like we are on the right track (whatever that is!). It also helps to know that she/I am not alone!!

Thanks so much!

Laura

[Debbie C]

How nice for you that your reumy lives next door ! Sounds like your mom is doing pretty well considering all she's been thru. 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.
Laura what were your Mom's symstoms with her head ??

[Debbie C]

I was just thinking, I just got all my bloodwork back and everything looked fine. Do they test your blood differently for brain and heart involvement ???? Now my anxiety is kicking in

[Dirty Don]

I was just thinking, I just got all my bloodwork back and everything looked fine. Do they test your blood differently for brain and heart involvement ???? Now my anxiety is kicking in

Take a Xanax, then look up blood protocols for brain and heart dysfunctions...should find something else there to worry about

[LauraNW]

During her third week after her diagnosis, she was undergoing plasma exchange for her kidneys. It was 7 treatments over 7 days. She had been having elevated BP, but was still very neurologically sound, even on 60mg pred daily. She was same ole mom. But during the fifth PLEX treatment, she had a seizure type episode. CT was basically normal except for two small areas that the radiologist and neurologist argued over significance. But after that I noticed that her mental confusion started. Quick recall, slow speech, confusion, etc. Not to brag, but Mom is VERY sharp and is/was an OR nurse. She has an amazing memory and is a very quick thinker. It was like a different brain was in her.

Five days later she became very disoriented and had a full seizure (at my house at 2 am, very scary. Also, she had only been out of the hospital for about 10 hours when this happened, so back we went.). CT showed a bleed so transferred to a bigger hospital. MRI showed signals consistent with either vasculitis or PRES as well as an area of hemorrhage. I should also say that she was on Coumadin at the time because of an upper arm blood clot from a PICC line.

She has been on keppra since with no further seizure activity. She has been having some continued headaches on occasion, but they seem to respond to Tylenol and a nap. MRI/EEG last month indicate just some small areas of damage that would be consistent with vasculitis. Neurologist wants to keep her on Keppra and recheck MRI in six months.

Her main thing is her personality change now, not that I would ever tell her. She is MUCH better than before, but not back to "mom". But hopefully getting to lower doses of pred will help! Even though it was the scariest thing I have been through, many positive things came from that neuro event that I am thankful it happened in a way, although I would not wish it on anyone.

i would definitely see a neurologist if I were you. So far I have watched this disease attack almost every body system that Mom has. And your brain is even more sensitive to changes in vascular status. Hope your appt goes well!


LW