MRI's

[Theresa2004]

Hi to the group, sorry, I haven't posted much to the other chat sessions.
I have enjoyed the biography of all who are here, added myself and have been fortunate enough to meet some of you. I wish I could join in on the daily banter, but it is not always possible within this insane household most days.
Anyway, I am an avid if not a more silent supporter to everyone. I have been watching Carol's situation closely and admire not only her strength, but all of the caregivers directly involved.
I have a question for the forum, which I will apologize if it is vague, but from all I have read, each one of you has had an MRI scan.
Could any of you tell me what connection and results it had in relation to this diagnosis? What did it show? Was there ever a mention to any of you there were spots/lesions on the brain?
Also, I have asked this before, is anyone or do you know anyone who may be taking any medication via IV, self controlled weekly or any other frequency?
Thanks to all who reply..Al, you can take a break on this one. I asked you this before,..so sit back and have your red wine...( I am kidding)...

[TBear]

Hi Theresa:
I'll take a stab at this! From my recollections, I believe that ALS is not diagnosed by finding some bacterialinfestation, viral infection or genetic disposition (although I may be wrong about the later with familial ALS). Rather all related conditions are eliminated. I'm not sure what the MRI and the EMG eliminates, but I suspect brain lesions and nerve damage are a possiblilty. I remember, going to the hospital for the MRI and, knowing the possibililties, praying for a tumour! How sick is that?

Hope this helps... and is somewhat accurate.

T.

[Theresa2004]

Hi Tbear, you are amazing to keep supporting others on this site. You are incredible to keep it up.
I understand why the MRI's need to be done to eliminate other possible reasons for symptoms, but has any one actually been told that they found something on their MRI which justifies this diagnosis? Or has everyone been told their MRI's were clear. No pun intended of course, the fact that people post indicates we all have a brain up there, it may be cluttered after some member of this group, no names of course, have had their red wine....no white wine and rum drinkers out there?(I am trying to be funny). But has anyone out there have a negative MRI, if so what did they find.
Thanks to all, again, this is an amazing group. Thank goodness for the introduction Melissa started, helps to go back and be reminded who is who.
Theresa

[Theresa2004]

sorry for the crappy typing, I need a new keyboard.

[me]

Theresa - I'm glad you like the intro. page. I've found it very helpful too.
As for the MRI. My Nathan had a normal MRI last spring. Of course, there's no diagnosis so whatever that means to you. I am curious what the others found too.

By the way, we're rum and tequila drinkers! We like the fruit drinks, marguerita's etc. I think we got hooked to rum on our honeymoon in the Carribean where they make it!

[Elaine]

Hi Theresa,
My MRI came back showing a grey area on the right side of the brain.
Lesions or lack of oxygen ,they really couldn't say.Maybe it's because I smoke and now it's so so hard to quit or just maybe, it was too many lemons in my delicious caesars......I really don't think they know, that's why it's so hard for us.There are no answers.
Everyone keep well , Elaine

[Carol Deboer]

Hi Guys,

What the heck ever happened to a nice, iced cold beer? I am a beer drinker, (occasionaly the odd bump of tequila) and there is nothing better right out of the bottle. Ice cold Canadian Light. mmmmm...... Yes, there really is nothing better. THis could start a big argument ha....

love yas...

Carol

[Al]

I had a CT scan a while back and it showed a lesion on the brain too. Dr. said at that time it was benign and not to worry. He said if you checked 100 people more than half would show something. Year later no growth so he must have been right. As for beer I would say on a hot day it is a good thirst quencher. Caesar's are my drink of choice in a restaurant with the appetizers and are absolutely the best for "hair of the dog" on a Sat. or Sunday morning. So no argument here. I'm such an agreeable fellow. Good looking and smart as a whip too. LOL.

[Theresa2004]

Thanks to everyone who answered me. I was really hoping everyone had a clear MRI, but I suppose that isn't the case no matter what they are looking for. The brain is a funny thing sometimes.

I think we should all agree to disagree to the drink of choice. But a cold beer on a hot day is really delicious, I just get a headache afterwards.

Now, if anyone has a treatment dealing with stubbourn men, let me know, mine appears to have underground. Guess I started asking too many questions. UGGG

[Carol Deboer]

Hi Theresa,

Do not even get me started on stubborn men. I am married (25 yrs.) to a stubborn dutchman!!! I have found there are some remedies indeed. I tend to spend his money ha!! Look honey, look what you bought me!! Or do not cook for a week. Man, that gets them every time.. Oh yeah, and wear sweatpants to bed !!!! lol Hope this gives you a couple of ideas!! Gotta laugh, good for the soul. I know that if I sit and watch NFL with him, and pretend like I am interested, he tells me to go shopping!! I like that one too!! Bt the way, Henrys MRI was normal. Lots of different answers eh? Take care.......

Cheers... Lots of luck with "the man"

Carol

[Theresa2004]

Thanks Carol, you have made me smile for the first time in days. My problem here is we don't live together, so for the moment, he can control the situation. Won't pick up the phone, won't send an email, and I am in no postion to break down his front door, however, the thought has occured to me.
I am wondering now, since it is about a year from diagnosis, and whatever symptoms are beginning to unfold more dramatically, (still can't say what they are), that between those, and some unknown family stresses I was told he needs to focus on, and health, the wall he built around himself has collapsed and in his own words, he can't deal with all that is before him at the moment. So what, has depression set in?
I should have pushed these issues with him long ago, but I didn't. Guess I am paying the piper now. He knows he can count on my support, but he likes to play superman.

[Carol Deboer]

Good Morning Theresa and all,

In the early stages with us, the first couple of years, Henry too was in denial. It was a very bitter pill to swallow. No one likes to lose their independence, strength, and function. You assume that it is not really happening, and then bam!!, it all kicks in. Depression as I have said a long time ago in my posts is an all time demon. This of course is an entitlement that somehow must come along with als, because of the vast power the ailment has over your body and mind. How do you deal with this? Everyone has their own way of dealing with desparity. We used lots of quiet time, holding each other, the human touch is such a powerful healer. Laughing, again a great coping skill. I know that much of our depresssion comes with a great loss of not being able to do the things we loved to do, or will never be able to do. It is an all consuming thing. I do not think you ever accept what you have lost or will lose. You just learn how to deal with it better as the days and months and now years go by. Be FIRM, just do it. Just love them as they are and how they will be. Assure him of that. Hope you have a good day. Must run and tend to "the Man". Talk soon..

Stay Strong....

Carol

[TBear]

Good Afternoon Theresa and All:

My wife's MRI came back with nothing. Of course the jokes only started there though as she was blonde... (sorry Carol).

Signed:

Another Stubborn Male... T.

[me]

T - I simply love your humor. I will learn from you and Carol. I gotta say, you both made me laugh out loud, seriously! :lol:

Theresa - From my current experiences, living with him doesn't make things much more open. It just gives you the opportunity to wear sweats to bed and spend his money (as Carol suggested). I think I'll try the sweats first, then to the money, then to his stomach! :) Just kidding.

Carol - you're right about the human touch. Today after work I told him I just needed a big long hug. He accommodated. I even had the thought of how relaxed I felt there. It was a much needed moment.

Okay, I guess I better get off of here and do some of that cooking. You know, it's pumpkin pie season. That's my tradition, pumpkin pies and apple pies in the fall. I think it's Nathan's favorite time of the year. He even eats them for breakfast (there's fruit and diary in them, right)!?

-me-

[sisterofl]

Hi Theresa,

My brother's MRI was clear.

TBear thanks for the answer re "Baclofen". The question is: will he accepts medication?

G

[Al]

Hi gang. Went to the Doc. yesterday and he took me off the Levodopa for cramping because it might be giving me major indigestion. I know a lot of people are taking the Baclofen but it is not without side effects. My liver tests came back clear so the Riluzole so far isn't hurting that organ and obviously the wine isn't hurting it so carry on as normal is what he says.
Some might find this a strange question but does anyone know if you can still be an organ donor with ALS? I have always filled out the paper on my liscence and am now wondering. Could I freeze my pancreas for later use by my diabetic son when they perfect that type of transplant. Just one of the random thoughts that go through your mind when you are in a strange position. I find this to be a strange position. I don't like it and don't want to be here but will accept my fate. They'll have to take me kicking and screaming (that is if I can still kick and scream) out of here but if not I'll give the big guy on the other side crap. He'll wish he sent me the other way. On a lighter note is anybody going to be at the CdnPals site for a chat at 9pm EST tonight. (THURS.)
Enough ramblings for tonight. Hope everyone is well.

[me]

That's great about your liver....drink on!

I might be able to make the chat. This is a Thursday I work late (sometime around then....by the way, what time zone was that chat again?) I'll be there if I can. - me-

[Al]

That would be Eastern Standard Time 9. PM or more affectionately known as Toronto time.

[TBear]

Hi Al:

I'm sure that you wanted to hear from me!!! My wife signed her donor card and asked the same question (although she was much further along than you). The response was not likely for transplant. Instead, she donated what she could to ALS research. Unfortunately, the closest neuropathologist is at University hospital in London. When the end came, I talked to Dr. Mike Strong (we had pre arranged this) and he took care of everything. If this is what you want, maybe you can talk to Myrna or somebody there. Whoever you are using for a funeral home will also have to be informed... now aren't you glad I wrote!

Hope this was informative and not too morbid!

T.

[Theresa2004]

Interesting how everyone has had a slightly different reading when it comes to these tests.

Al, glad to see you are still allowed some red wine, so drink and be merry.

thanks to all who assisted in this.