Neurosarcoidosis MRI

[NightShade]

So I know a lot of you guys have heard me speak about my wife and her illness. To look at her it's hard to see what is wrong and a few of you have been able to meet her as well but we wanted to share a couple images that shows the extent of things that have happened. Below are a couple of quick scans I was able to make of some of the films she has from 2007 with a light behind so you can see for the most part what they look like. I know we have a disc somewhere of MRI's since then but for the life of me I can not find it. If you look at the second image you can clearly see the eyes which are fluid filled in the middle of page. At the top and bottom you can see area's in her brain that are similar. That is due to the swelling that has happened in her brain. The first image shows a little more detail the extent of some of the damage. These were taken not long before we were married and the area's have likely spread little by little over time. I could not scan all of the images but if someone wanted to see the original films I am sure some arrangement can be made to meet up at some point. I also have films from around 2000 from when she was diagnosed.

 

[MacFromOK]

Sorry man, that's some scary stuff. :/

https://www.ninds.nih.gov/Disorders/All-Disorders/Neurosarcoidosis-Information-Page

 

[Annie]

Bless her heart.

 

[NightShade]

I think the worst thing I have had to deal with it all is the seizures. I have had quite a few times where if she does not get enough sleep or is getting sick where she will basically not be aware of what is going on for a while and will eventually go in to facial convulsions and then full body convulsions. The meds for it help as at one point for almost two weeks she was constantly being absent and at the end was convulsing multiple times.

 

[SoonerP226]

The seizures are a ***** and a half, that's for sure. I've witnessed my brother having a few, and it's not fun. Fortunately, they finally found a drug (topamax, I think) that has done well in controlling his seizures.

Here's hoping for the best for your wife and you.

 

[Annie]

The seizures are a ***** and a half, that's for sure. I've witnessed my brother having a few, and it's not fun. Fortunately, they finally found a drug (topamax, I think) that has done well in controlling his seizures.

Here's hoping for the best for your wife and you.

Oh man, they had me on topamax for less than 2 weeks. The personality change was dramatic -- and for me, dangerous. It took nearly 2 months for me to titrate back off it and get back to myself. I was insanely angry and had a hair trigger the ENTIRE time that medication was in my system.

I know medications act differently on everyone so she might not have the same reaction but it's good to know what to watch for just in case.

I fluctuated back and forth between screaming at EVERYONE and uncontrollably bawling my eyes out for almost 3 months. The worst thing about the whole deal was I KNEW I was being unreasonable but I couldn't control it. Grumpy said he knew it was gonna be a rough ride when, 2 days after starting on 12.5 mg twice a day I was screaming at the dogs and threatening to get rid of ALL the critters but the doctor insisted it would pass and I needed to continue taking it, and even increase my dosage over the next couple of weeks. What an adventure ...

 

[DRC458]

Our thoughts and prayers are with you both. I know it's extremely tough.

 

[chuter]

Seizures are some scary stuff, sorry to hear you guys are having to deal with this.