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Having EEG, BEAR, etc.

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Posted 5/28/2008 10:20 PM (GMT 0)
Hi!

I want to thank all of you for being so supportive and helpful with this struggle I am having trying to find out if I have MS or not.

My tests are coming up and I was wondering if anyone has had these before and what they mean? Will these tests tell me that I have MS or do I have to do more testing? If anyone has had these done before and wants to share I would really appreciate it.

Today I felt that crashing fatigue so I went out and got a double espresso mocha at Starbucks. I also cried a little today because I'm so frustrated. I want my old brain back sad

Carolyn

Posted 5/29/2008 1:00 AM (GMT 0)

Tapestryloom said...
Hi!

I want to thank all of you for being so supportive and helpful with this struggle I am having trying to find out if I have MS or not.

My tests are coming up and I was wondering if anyone has had these before and what they mean? Will these tests tell me that I have MS or do I have to do more testing? If anyone has had these done before and wants to share I would really appreciate it.

Today I felt that crashing fatigue so I went out and got a double espresso mocha at Starbucks. I also cried a little today because I'm so frustrated. I want my old brain back sad

Carolyn

MS is a diagnosis of "exclusion".  Meaning, the doctors want to rule out everything else but MS.  These tests will look at brain waves from your brain to body parts, and see whether the flow is "normal" or "abnormal", and if "abnormal", what might be the cause.

Generally what happens is that the doctors run all these tests, then sit down and compare all the results with what they know about you -- the clinical signs they've been able to determine in their testing, and the symptoms that you report (like numbness, tingling, whatever)...and if there is no other possible cause, then they'll likely diagnose MS.

As for "getting your old brain back"....if you DO have MS>..that's not likely, unfortunately. So long as MS is not cureable, and only treatable, you'll have to learn, over time, how to function with a brain that doesn't work quite properly.  It takes time -- I'm still working on it after 25 years...but it's possible.

Posted 5/29/2008 1:02 AM (GMT 0)

Hey Carolyn,

I am so jealous of all your hiking!!  So anyway, I not familar with BEAR.  I am familiar with an EEG but I did not have that as part of my diagnostic process.  I had a nueruological exam, MRI, blood work, evoked potentials, and a lumbar puncture.  From those it was a done deal.  It was very straight forward for me.  I had multiple lesions, no sign of any other infection, oligoclonal bands and evidence in my neuro exam.  I know it is not that easy for others.  Some people have some indicators of MS but it is an incomplete picture.  That picture can take years to fully develop.  Try to be patient.  Keep a journal or record of your symptoms and keep after the doctors.  That is the best you can do.  Being in limbo can be very frustrating. I wish you the best of luck.

Love and prayers,

Posted 5/29/2008 2:28 AM (GMT 0)
Gretchen,
The Bear test (I asked and probably have the initials wrong) are a brain stem evoked response test.
I also took some Ginko biloba today and it brought my congitive processes up a notch. The caffiene didn't really do much. I'm slightly more awake. When I sat on the couch after running around shopping, cooking dinner and nursing James I felt REALLY SLEEPY. Gee, I wonder why?
Carolyn
Posted 5/29/2008 12:52 PM (GMT 0)
Carolyn amazing I have 4 kids too youngest 4 months. I am right there with you :) I know how you feel I really really do. we will get through this. we have to especially with our munchkins. are you breastfeeding? If not provigil does help me some I have doubled my dose recently. If you are not against taking meds it is worth asking your neuro for some. I got over not taking meds a long time ago...I had to to get by. I am in virginia beach...are you close to me? If so we should go for coffee!!
Posted 5/29/2008 7:59 PM (GMT 0)

This, by the way, is likely what you had  -- BAER (not bear):

http://www.lsu.edu/deafness/baerexpl.htm

Posted 5/29/2008 11:44 PM (GMT 0)
Hi Carolyn!
Thanks for writing. Yes I am nursing my 7 1/2 month old and currently trying to nite wean him. I could use the sleep for sure. I live in CT. I saw your post last week. Let's be buddies. Us moms have bto stick together. And Yup, that's at the top of my list. What about my kids?!
take care
Carolyn

p.s. I would love to take meds right now but I need a dx. first. I am trying to be patient. I do feel less tired today. I went for another hike today and felt pretty good.
Posted 5/31/2008 3:19 AM (GMT 0)
Hi!
I am feeling ever so slightly better today. Some of the brain fog has lifted. Estimating about 10% And my energy was okay till around 5pm when I got soooo sleepy.
I'm going to ask my PCP to do a complete blood work up on me. Like they say.. You have to start with the small stuff and then go from there. Maybe it's my thyroid? I do have (sorry TMI) loose bowels all the time and my hair is falling out. But the hair falling out is normal for someone who just had a baby. And I am a little off with my appetite. I guess these tests will show something for sure. I am patiently waiting.
Thanks for all your help everyone
Carolyn
Posted 6/5/2008 3:04 PM (GMT 0)
Since my other post is gone?? I'm posting here since it's all related and I don't want to double post.
All my blood work came back normal on my thyroid, B-12, Lyme (western blot) I had my EEG and BAER yesterday. Still extremely tired during the day. I called my neurologist to ask if he could do anything for me. I am in the process of giong to a wellness Center next week so I'm gethering up all my labs, records, etc.
Thanks everyone for your help
Carolyn
Posted 6/5/2008 3:52 PM (GMT 0)
Sorry about that Carolyn, that was me.  I hope you get some answers real soon.  Keep pushing.  Tell me again why no lumbar puncture?  As I remember you do have lesions yes?  Sorry I am asking you to repeat yourself but I can't remember your details. 

Posted 6/5/2008 4:57 PM (GMT 0)
Gretchen,
Findings on MRI read: Several small lesions of increased intensity, located in the lateral portion of the ventricles. With a patient of this age it is "Most likely" multiple sclerosis.
Saw Neuro.. he looked at films and said that he saw nothing that indicated MS. Saw lesions too and said that they would be grouped together?
Anyway, he ordered non invasive test EEG, BAER and a brain wave next TUesday. He wanted to do MRI of spine but because of nursing was going to hold off.
I am waiting to hear back from him re: tests. Takes 5-7 days to get results in
thanks
Carolyn
He did not order a lumbar
Posted 6/5/2008 10:46 PM (GMT 0)
Hey Carolyn

O well here's u'r answer! It seems there were some rules violations within the missing thread and for that reason the thread was deleted. Anytime there is a blatent violation that continues after requests to cease, a thread can and will prob be deleted by a mod. I'm glad u went ahead and posted here and sorry for the missing post. The delete wasn't intended to remove u'r post, but if that ever happens just do what u've done here again. Thanks for u'r understanding!
Posted 6/6/2008 2:13 AM (GMT 0)
Rhonda, Can you please email me the deleted post? Yes, I see that 2 members were battling it out on my thread.
thanks
Carolyn
Posted 6/6/2008 2:27 AM (GMT 0)
Hey Carolyn

I"m sorry, i don't have a copy of the deleted thread. I will see if it was copied, but i suspect not. If i can get it tho i will send it to u.
Posted 6/6/2008 2:38 AM (GMT 0)
I saw my PCP Dr.( PA) today for what I thought was congunctivitis. It was a sty. The woman mentioned to me that my symptoms sounded like Fibromyalgia. Sure enough I have several of those symtoms too. I do have light sensitivity. However, the aches I have aren't bad. The worst and scary part of my symptoms are the brain fog. Suppliments are helping with that. I will continue to keep track of my symtpms and see what the Neurologist has to say. I felt good that I sent the release forms out. My friends have told me that I am kind of a researcher type. I'm trying to learn as much as I can about this.
Thanks for all your patience and guidance. I'm sure time will tell !
Carolyn
Posted 6/22/2008 3:31 AM (GMT 0)

Hi folks,

I had both the evoked tests and they have come back normal. I went to see a Rheumatologist on Thursday who was pretty sure I have Fibromyalgia. He recommended a book to read.

I just want to thank everyone for your support while I was trying to figure out what was going on with me. I already feel much better. Good luck to you all and God bless

Carolyn

Posted 6/22/2008 4:11 AM (GMT 0)
Hey Carolyn

U"r so welcome! I"m so glad to hear u have a dx and will be getting some treatment now! Take such good care of u'rself and know u can come here and ask questions or post as much as u like! U'r a welcomed friend!
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