Autoimmune Brain Disease

[dowma]

Well I posted some time ago after been diagnosed with autoimmune brain disease from open brain biopsy which showed extremely rare antibody cells and microglial acitvation.  I'm now on high dose of prednisone and just started imuron as well.  They want to eventually ween me off the 60mg of prednisone in a few weeks and continue the imuron and see how that works.  I'm still having seizures cause of the inflammation which seems to have gotten worse in type so now increase in seizure meds as well as well as ativan at night.  Too many pills!!! The plan is to possible start me on methotrexate and hopefully not get to cytoxan which I really really hope we dont get to.  I guess they weill see how I do clinically as far as my cognition goes, they will repeat neuropsych at some point as well as EEG and other diagnositic testing.  I have to say this is so frustring because this disease is so rare!!  its not ADEM.  It really doesnt have any other name is not really heard of by many neurologists.  I'm fortunate to have a wonderful neuro from NYU who is also board certified in pathology who really knows his stuff and I trust him 100%.  
Currently working on disablility which let me tell you is really not fun giving me such a hard time with all the paper work.

Sorry just really needed to vent hope you don't mind it came out here.  I've been searching the web and theres only one other article titles "autoimmune brain disease" but I'll keep looking.  I see autoimmune thyroiditis and hepatitis but not just strictly to the brain.  
Thanks for listening and all your support.  
Mary Beth

[dowma]

I read that article it was very helpful.  I'm helpful that since I have new diagnosis from biopsy that will help wit disability paperwork.  
Mary Beth

[dowma]

I've read posting about your husband and all the run arounds you both have had regarding his condition....

I'm so glad you were able to get some results and help at NYU.  I too am so grateful for the doctors there I couldn't have done it without them.  I wish you both all the luck and know that although many people dont post we still have you both in our prayers!!!

Mary Beth

[dowma]

Thank youall so much for all your responses and support.  Deb I've had every test imaginable, labs, 2 spinal taps sevreral VEEGs EMGs, MRIm PET MEG neuropsych whew.  ms consul also at nyu.  All dont fit the criteria of MS or anyother rheumatological or neorological disease.  I've already exhaused the IVIG with no relief which is why i had brain biopsy gave me final diagnosis.  
I am really grateful to everyonehere!!!  Its just so nice to have someone to talk to when others just dont understand, especially when I'm trying to explain something so rare.  Its bad enough I have cognitive issues and difficulty with expressive language to begin with that certainity makes matters worse.
Do any of you take imuron?  If so any side effects experienced?  Tired of all the meds, now on 11 pills a day.  Ok enough about me reading about everyone else and hope everyone is doing ok too.  I'll be posting alot more now since I'm home and have lots of friends on this site.  Have a happy holiday weekend.  your friend.  Mary Beth

[sllowe]

Welcome back! Good to see you.  I hope this round of meds works for you.  Sorry to be so brief.  Looking forward to seeing you around when you are able.

Take care,
Shelly (formerly SL)

[Quixotic1]

I also did some reading and found lots of references to your disease.  Yes, it is very rare and it is not ADEM.  It is a more widespread brain disease than MS and can be very aggressive and disabling.  I am more than pleased that you have a physician who knows what you have and has a real plan for attacking it.  Good for him!  --- and for you!!

You "may" post in that other forum, but just for giggles, you understand.  Your problem closely matches ours and you'll be comfortable posting here cause we understand this kind of thing.

I will also tell you what I did to get approved for Social Security Disability the first time and in about a month.  I got copies of all my pertinent medical records, including all the hospitalizations and sent them all two cases of the records along with my application.  I was very clear about what I was no longer able to do.  However, everyone else I know has had a horrible time getting approved.  And I think the suggestion to get a disability attorney is a good one.  Usually there is a free consultation.

Glad you're here!

Quix

[monotreme]

Hi Mary Beth,
   This is just my two cents, but please consult a disability attorney.  For payment, they usually take a percentage of just your first check.  They can streamline the process, give you a much higher chance of getting approved, and save you alot of aggravation filling our paperwork.

  My husband was diagnosed at NYU  MS center after a long long time of going to other neurologists with no diagnosis...said he was mentally incompetent.  So horray for NYU!!!!

  Good Luck and welcome to the forum!!

   Elaine

[wishforchange]

Hi and welcome,

I notice there is also a forum here for rare diseases, may be worth posting there as you might find another sufferer.  But of course feel welcome to stay here and I hope you get good support from this great forum.

Wish

[Deb61]

Welcome!  I'm so sorry about having to go through all of this--I bet you do feel like you're out there with no support.  I'm glad you found this forum.  You're welcome here with open arms and will be here for you, sweetie.  I hope that you have a lot of family and friends who are there for you, too.

I just looked up this disease (on the two web sites that I found) and I am baffled.  

See the following quote:

"Bystander damage: In this theory damage to the nrain causes cytokines to be released which provoke, after a delay, additional immune reactions. This theory might explain the attack/remission cycle of disorders such as Multiple sclerosis."

I wonder how your doctors know, without a biopsy, that one has true MS or if it is autoimmune brain diseasae?  Is there a difference in the way the brain lesions look on the MRI?  I also am wondering if this autoimmune attack is secondary to another disease process like lupus, etc.

In the site I found (probably the one you've been to, see below), it states that DMD used for MS are commonly used.  Are you going to be starting one of those?

Mary Beth, again I wanted to say you're welcome here any time.  I am happy that you found a good neuro at NYU.  We're hearing lots of good things about the neurology department at NYU.  From what I hear on this forum, it's a rare thing to find a good neuro and one that you can trust.  He sounds like a keeper!

I've not tried to apply for disability, but would imagine that there would be tons of paperwork.  I hope that you're able to get disability quickly and you don't have to put up much of a fight.  

Best wishes, sweetie.  I hope the seizures get under control and you're feeling better soon.

Deb



Because I quoted from the site, I included the web page:
http://www.tchain.com/otoneurology/disorders/autoimmune/aibd.html