To DonnaReagan

[KathyS]

Please let us all know how your MRI went. I have been wondering how you are. You have been in my thoughts and prayers.

Kathy S.

[rhonda]

(((((((((((((((Donna))))))))))))

PLEASE LET ME KNOW WHAT IS GOING ON.
I AM WORRIED ABOUT YOU !!!!!

XOXOXXOXOXOX

[Alyson]

Hope things are looking up for you. Let us know . . .(((((((((((((((Donna)))))))))))))))
alyson

[DonnaReagan]

My my - how time can STILL FLY when you're NOT having any fun!!! <img src="graemlins/eek.gif" border="0" alt="[eek]" />

Sorry ya'll - didn't mean to worry any of you. I do appreciate the concern & the prayers.

I can't remember what I had told ya'll before as my memory is not what I'd like it to be.

In short -- had the MRI's so I could be evaluated for MS. The brain scan has "white matter" with "chronic ischemic changes" blah blah.

My reg. doc got me worked in with a neuro today - and the neuro said to my surprise & my delight that he is fairly certain that I do NOT have MS! Halelujah! <img src="graemlins/angel.gif" border="0" alt="[angel]" />

As for the white matter - neuro said it can be found in "normal" people's brains (as opposed to "abnormal" people like me?)
[img]rolleyes.gif[/img]

As for the secondary symptoms - they actually started getting better after I stopped taking a couple of meds - after I went & saw pain doc & DEMANDED to be taken off of them. Another long story, however since I'm feeling a little stifled by what I can & can not say on the new & improved boards....I'll spare you the details & bite my own tongue. Ouch.
<img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/toilet.gif" border="0" alt="[toilet]" /> <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />


Feel free to email me personally: [email protected]

Looking forward to meeting ya'll in person soon. Who wants to take charge of our first gathering? Notice I am not raising my hand at this time.

Take care.

Hugs,prayers,
&laughter(when/where you can find it) <img src="graemlins/jester.gif" border="0" alt="[jester]" />
DonnaReagan
[email protected]

[pandora]

I am soooo glad to hear from you. I wish that I could raise my hand to get us all together, but I am not to good at doing that sort of thing. I have something else in common with you as I had to have a MRI and they also found white matter in my brain....They thought that I had MS also..I think it is all of that white matter in our brains that make us sooo special. I think that THEY don't have a clue what the white matter is or how it got there. It feels so good to finally write to someone about this strange disease IC...Happy 4th..k

[redstonebef]

I too have white matter in my brain. One said it was from old age I am 55. Another said it was from High blood pressure. So in other words they don't know what the heck it is in my brain. We were looking for reasons for my seizures, of course, with me there is no reason. But I do have them/. Hugs

redstonebef

[redstonebef]

Hey most of us seem to be from Texas. Ha, maybe its the hot sun here that causes white matter. Hugs

redstonebef [img]biggrin.gif[/img]

[liz2]

I don't know about any white matter, but I do know that the hot Texas sun saps as much energy out of a person as does a severe case of IC. <img src="graemlins/eek.gif" border="0" alt="[eek]" />

Does that mean that those of us in Texas have a dual problem?

[img]confused.gif[/img]

[DonnaReagan]

To all my fellow Texans with the white matter in their brains.... I guess we could all form a sub-support group: "The Texas White Matter Gang." (All of a sudden I have this urge to wear leather -- don't ask me why.)

My neuro basically admitted that in most cases they don't know why it's there. Which combined with a comment another doc made to me recently: "I tell all of my med students that 1/2 of what we are teaching them is wrong. The only problem being that we don't know which 1/2 is wrong and which is right." Ah, that's comforting, don't you think?

Anyway - the neuro also suggested they see white matter quite frequently with migraine sufferers. I understand that many ICers also have migraines. Hmmm.

It was kind of funny that the neuro told me that about migraines - because when my regular doc (or shall I say, my doc's insurance lady - another story) informed me that my brain had the white matter..with chronic ischemic changes... I looked up all the words from the report in a medical dictionary - since I couldn't get my actual doctor on the phone for awhile - and I was very freaked out because of not understanding what that meant.

When I looked up the word "ischemic" it basically said that it is a loss of blood supply caused by a stroke, a clot, or "vasoconstriction". As a migraneur - I immediately made the connection. So when I FINALLY got to talk to my doc - I asked her if those ischemic white matter deally-bobs could be like migraine scars. She said "yes".

HOWEVER - while waiting to gain an audience with a neuro - I asked a couple other of my docs (don't you just love having SEVERAL docs...?) about the migraine scar theory --- and they all shot it down. "Migraines don't do that." So then I was thinking that maybe I misinterpreted what I read in that medical dictionary and that my regular doc didn't know what she's talking about. After all - just a couple of weeks earlier, she took a look at all of my symptoms, scratched her head and said, "I hate to admit this - but I think you're over my head." Yeah, it was a real comforting moment for me. But at least she was honest.

So when the neuro confirmed my hypothesis - I just wanted to go sign up for medical school myself! Here lately I've realized that, gee, docs are human too - they make mistakes like everyone else - they DON'T know everything - and anybody with a working brain that can learn & comprehend new vocabulary words, & has the physical/emotional stamina to work around the clock at times can be a doctor. OK - off my soapbox now.

Really would like for someone to get us DFW Texans going so that we can meet. I love having a live audience when I get wound up. (Just kidding -- maybe.)

Hope you are all doing well. I haven't been on the boards lately, as I have my fingers in a really fun pie right now. It's providing me with lots of positive energy - that can only be good for the rest of me too! I do feel like I'm headed for remission - but just about as soon as I speak that - my bladder tells me different. But I know that I am, nevertheless. I will think my remission into existence if I must. I'll let you know how that works.

Email me people! [email protected]
And if you do - be sure & put something in the subject line that lets me know who you are - like "Rhonda from ICN" etc. Like most of you - I too get lots of junk mail that I mindlessly delete....and sometimes that's a problem. And if you've written me - be patient for a response cuz my fingers may be gooey from working with my pie & it may take awhile for me to get back with you.

Bye for now,
DonnaReagan

[Alyson]

Donna, you are TOO funny! [img]biggrin.gif[/img]
I wish I could take on getting our group together, but I am so busy w/ my kids--my son(who will be three next month) has a speech/artic. problem and we are in the process of having testing done w/ him. It is taking all my energy at the moment.
I'm probably the furthest north, huh? I'm in McKinney. We need to find a mid-point to meet. Any suggestions? I'm all for just picking a spot and doing it. How many are near Dallas? Ft. Worth? I can't wait to meet y'all!
Alyson

[dyno]

Hi Fellow Texans,
Although I enjoy the message boards and this site has been a god send for me, at this time I know there is no time for meetings for me. It is so good to know there are people out there that even if it is just by this computer I can have contact with though. If Donna R. or anyone else who might have a uro in Ft. Worth reads this, I would love to know who your uro is. I will be seeing a Dr. Price at the end of the month. This is a great site and I am enjoying all my new "friends".

[rhonda]

Ok, We fellow Texans need to get the support group thing going.
I am not sure who lives where and/or how close we are to each other. So, let me know if you think this is a good idea.
Saturday lunch at like Chilis or Bennigans (of course those places are really loud though) So I just do not know of a place where we can sit and talk ( that is Donnas favorite thing to do - LOL)
(Just kidding Donna)
So how close is Arlington or Irving to you guys ???
Let me know of any ideas, if one of those places would be ok. I am really ready to get this support thing going.

I am pretty much open to anything at this point.
Ok ladies give me some ideas and lets get the ball rolling.

Hope you all are having tolerable days. (stole that from someone - cannot remember who)


<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Alyson]

I am in McKinney(about 35 miles north of Dallas on 75), so Arlington and Irving are both quite a ways from me, but we should meet somewhere midway for all of us. Saturday lunch would be great for me. I, too, am ready to have people to talk to who UNDERSTAND exactly what I'm going through! <img src="graemlins/hi.gif" border="0" alt="[hi]" />
Alyson

[rhonda]

Ok - Here is the plan (let me know if you think this is ok and you would like to meet)

Allyson lives 35miles north of dallas and I live 35 miles south of dallas - So we could me in Dallas. I know of a few places we could meet that would be pretty easy to find
1) cheesecake factory ( this is at 75 and Northwest Hwy - by North park mall)
2)Jasons Deli ( on Mockingbird - not sure exactly what the address is but it is near I-75)
3)or we could just find a Chilis or Bennigans over in the area of Dallas or Irving - I am thinking that one of those two areas would be ok.

Anyone that is interested please email me and let me know what is good for you - I am open to drive where ever. I am really anxious to meet you all and talk with someone who truly understand.

Hope to hear from you soon.
Take Care

My email - [email protected]

[redstonebef]

One thing we need to know does everyone work. If they do work we will have to meet on a Sat. if not, during the week. How about it? any preference. I don't work so during the week is good for me. The Dallas traffic is terrible. I like the meeting place around Northpark. Or near Valley View mall too. There is a real nice Hotel ( Pink)I will have to put my thinking cap on to remember the name ( A NEURONTIN MOMENT) Anyway they have a lovely eating resturant with all the beautiful plants all around. It is quite lovely there. It is at the intersection of 75 and 635. Let me know and I will find out. Hugs <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

redstonebef