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RedPenguins 04-20-2008 11:42 PM

Freaked out, too!
 
Hey Natalie,

I can see why reading that article would make you freaked out - it isn't making me feel too good either!

I remember reading my report and then asking both neuros what exactly was meant by "multiple" and "several" - and the only response they could give me was that the radiologist stops counting at a certain point... That sounds awful to me (one that they stop counting, and two, that I had several and multiple and didn't know exactly how many).

Of course, I had to pull out my MRI results and re-read them (not that it made any sense to me 3 months ago). My report talks a lot about High T2 and FLAIR signal intensity. I researched it...but of course nothing out there really explains any of it in full clarity, in my opinion. Then again, my vision sucks and my head hurts so much, that probably I couldn't make sense out of a **** (oh, they put *s there - for the nickname for Richard) and Jane story!

And while I read the report, I just get stuck every time I get to the lines that say MS. I just freeze in place.

Okay, putting away report. Gearing up for next MRI, hopefully this week or early next (before my 2nd Tysabri on May 2).

I agree that reading and researching can drive one nuts....but I also can't help myself. Sometimes I try to distract...yet it is hard to sit back and knit and read HP when you see double, are dizzy, and your head hurts like heck!

~Keri

Natalie8 04-21-2008 12:01 AM

Quote:

Originally Posted by Erin524 (Post 263115)
So, instead of Googling MS stuff, look at all these cute pictures of Pug puppies instead. :)

Arent they cute? Guaranteed to take your mind off of serious stuff.

Puppies are much more fun to look at than old medical records. Very cute pugs. I've always wanted a great dane. Check out the dane puppies and adults here.

http://images.google.com/images?sour...=1&sa=N&tab=wi

These are some big *** dogs!!! Look at the "Redneck Great Dane Puppy" -- pure white...so strange! Although he looks pretty big to be a puppy.

Erin524 04-21-2008 12:09 AM

Quote:

Originally Posted by Natalie8 (Post 263131)
Puppies are much more fun to look at than old medical records. Very cute pugs. I've always wanted a great dane. Check out the dane puppies and adults here.

http://images.google.com/images?sour...=1&sa=N&tab=wi

These are some big *** dogs!!! Look at the "Redneck Great Dane Puppy" -- pure white...so strange! Although he looks pretty big to be a puppy.

I used to have a Bouvier des Flandres, named TinyMonsters. Those are big dogs too, not quite as large as a Great Dane tho, but still pretty huge.

I keep waffling back and forth on wanting another dog. I want one, but I think I have an allergy (my allergies all improved after Tiny died, and I had an allergic reaction when I tried to adopt a Yorkie 5 days after Tiny left us)

Then there's the whole fatigue part of MS that's also holding me back on a new dog.

My aunt's Pug just died last month, and she's considering getting a new one, and I'm kind of thinking of getting one from the same litter if we can find some.

I miss my dog, and I miss my aunt's dog. (both our dogs were best friends in the world, they even died on the same date, 2yrs apart)

Natalie8 04-21-2008 12:20 AM

Quote:

Originally Posted by RedPenguins (Post 263126)
Hey Natalie,

I can see why reading that article would make you freaked out - it isn't making me feel too good either!

I remember reading my report and then asking both neuros what exactly was meant by "multiple" and "several" - and the only response they could give me was that the radiologist stops counting at a certain point... That sounds awful to me (one that they stop counting, and two, that I had several and multiple and didn't know exactly how many).

Of course, I had to pull out my MRI results and re-read them (not that it made any sense to me 3 months ago). My report talks a lot about High T2 and FLAIR signal intensity. I researched it...but of course nothing out there really explains any of it in full clarity, in my opinion. Then again, my vision sucks and my head hurts so much, that probably I couldn't make sense out of a **** (oh, they put *s there - for the nickname for Richard) and Jane story!

And while I read the report, I just get stuck every time I get to the lines that say MS. I just freeze in place.

Okay, putting away report. Gearing up for next MRI, hopefully this week or early next (before my 2nd Tysabri on May 2).

I agree that reading and researching can drive one nuts....but I also can't help myself. Sometimes I try to distract...yet it is hard to sit back and knit and read HP when you see double, are dizzy, and your head hurts like heck!

~Keri


Hi Keri,

I'm sorry I freaked you out too with those articles!! :eek: I don't know why I went back to look at my MRI reports or why I was researching MS stuff again. Probably because I started panicking about what might happen if I can't tolerate the copaxone. It's making me feel kind of flu-like. Then what is next?? Interferons are out because of a history of depression (2 weeks of Rebif and I started getting massively depressed not to mention sick as a dog). Tysabri scares me. How are you doing on that? Did your first infusion go okay? I followed some of your threads and was glad to hear you finally got on it.

Yes, the whole "at some point we stop counting" REALLY scares you, doesn't it? Yeah, every time I see the word "multiple sclerosis" I get frozen too. They are such two ugly words. Why couldn't it have a better sounding name? Like C.B. for cotton balls? Or PBP for Pretty Brain Pattern?

I am also sorry you are feeling physically crappy too. I was going to say s**tty but they blocked out my previous use of (another word for donkey) so I figured that one wouldn't be okay either.

The first neurologist I saw who had to admit me into the hospital because my internist couldn't (and it was Friday and he was the only guy on call) was terrible. I dumped him right away. BUT...he did give one good piece of advice. He said not to go online and google about other people's experiences because everyone has a different course--no two cases are really alike--and there is no point in trying to scare yourself or compare. My MS therapist told me that it's no use looking at statistics either because they don't account for individual experiences. She believes in what she calls the "X factor" -- the unknown possibility of doing well or not becoming one of the "terrible" statistics.

Anyhow, I hope I wasn't the cause of too much of your anxiety!! :hug:

Natalie

Natalie8 04-21-2008 12:29 AM

Quote:

Originally Posted by Erin524 (Post 263132)
I used to have a Bouvier des Flandres, named TinyMonsters. Those are big dogs too, not quite as large as a Great Dane tho, but still pretty huge.

I keep waffling back and forth on wanting another dog. I want one, but I think I have an allergy (my allergies all improved after Tiny died, and I had an allergic reaction when I tried to adopt a Yorkie 5 days after Tiny left us)

Then there's the whole fatigue part of MS that's also holding me back on a new dog.

My aunt's Pug just died last month, and she's considering getting a new one, and I'm kind of thinking of getting one from the same litter if we can find some.

I miss my dog, and I miss my aunt's dog. (both our dogs were best friends in the world, they even died on the same date, 2yrs apart)

Wow, Tiny is a very very big dog. Very attractive too. I am trying to cultivate an interest in dogs because I can't have cats anymore. I had to give away my Abyssinian cat after 7 years. I developed horrible cat allergies that came out of no where. I tried everything--allergy shots, acupuncture, chiropractic, you name it. Nothing worked. It just about killed me. Fortunately, an old boyfriend that had lived with me and the cat took him so he went to a familiar person. I still get reports and photos. He is now 15 and is a diabetic. The old BF has to give him insulin shots everyday! So the cat and I do the daily shots.

Erin524 04-21-2008 12:52 AM

Quote:

Originally Posted by Natalie8 (Post 263138)
Wow, Tiny is a very very big dog. Very attractive too. I am trying to cultivate an interest in dogs because I can't have cats anymore. I had to give away my Abyssinian cat after 7 years. I developed horrible cat allergies that came out of no where. I tried everything--allergy shots, acupuncture, chiropractic, you name it. Nothing worked. It just about killed me. Fortunately, an old boyfriend that had lived with me and the cat took him so he went to a familiar person. I still get reports and photos. He is now 15 and is a diabetic. The old BF has to give him insulin shots everyday! So the cat and I do the daily shots.

I started to develop all sorts of allergies around the time that I think my MS started. I've always kind of wondered if MS is related to allergies somehow. Allergies are abnormal immune responses, and MS is the mother of all abnormal immune responses.

RedPenguins 04-21-2008 01:48 AM

Quote:

Originally Posted by Natalie8 (Post 263135)
Hi Keri,

I'm sorry I freaked you out too with those articles!! :eek: I don't know why I went back to look at my MRI reports or why I was researching MS stuff again. Probably because I started panicking about what might happen if I can't tolerate the copaxone. It's making me feel kind of flu-like. Then what is next?? Interferons are out because of a history of depression (2 weeks of Rebif and I started getting massively depressed not to mention sick as a dog). Tysabri scares me. How are you doing on that? Did your first infusion go okay? I followed some of your threads and was glad to hear you finally got on it.

Yes, the whole "at some point we stop counting" REALLY scares you, doesn't it? Yeah, every time I see the word "multiple sclerosis" I get frozen too. They are such two ugly words. Why couldn't it have a better sounding name? Like C.B. for cotton balls? Or PBP for Pretty Brain Pattern?

I am also sorry you are feeling physically crappy too. I was going to say s**tty but they blocked out my previous use of (another word for donkey) so I figured that one wouldn't be okay either.

The first neurologist I saw who had to admit me into the hospital because my internist couldn't (and it was Friday and he was the only guy on call) was terrible. I dumped him right away. BUT...he did give one good piece of advice. He said not to go online and google about other people's experiences because everyone has a different course--no two cases are really alike--and there is no point in trying to scare yourself or compare. My MS therapist told me that it's no use looking at statistics either because they don't account for individual experiences. She believes in what she calls the "X factor" -- the unknown possibility of doing well or not becoming one of the "terrible" statistics.

Anyhow, I hope I wasn't the cause of too much of your anxiety!! :hug:

Natalie

I want PBP - Pretty Brain Pattern. I say that we start a campaign on that immediately....with all our spare energy. LOL :p

No, you didn't create more anxiety in me...I was having it already. I'm researching alternatives in case Ty doesn't work for me (but it will!!) - b/c I think knowing the information helps me when I have a panic-relapse! ;) This way when I begin to think "What if the Ty doesn't work" - then I can answer myself with, "Okay, I will do XXYYYYZZZ then."

My first Tysabri infusion was great - no complaints...was very easy (uh, yeah, I mean the infusion part - not the "getting to the infusion" part...but I think you read about that part!). I had some major fatigue afterwards and just felt like crud for a few days... but no other side effects directly related to the Tysabri (just the MS).

I'm not frightened of the Tysabri...the MS scares me more...so it was more than worth it to me to get on it. I agree that we can't rely on other people's disease experience...b/c we are all different...but it seems that with Ty, if it works for you, it REALLY works for you...and if it doesn't work, then it doesn't! The possible benefits of Ty far outweighed the risk. I think the problems with Ty have been over-sensationalized....but to be honest, I'd rather know of the possibilities....I just didn't let them scare me. Besides, the interferons scare me way more than the Ty. I go for my 2nd infusion at on May 2. I'm all prepared: ativan in one hand, benadryl in the other. Oh, and I guess I need some extra hands to carry my blankey!

BTW, I like small dogs...I just got a yorkie puppy for Xmas (sadly, she now lives with my best friend and her toddler....b/c I couldn't take care of her).

~Keri

sheena 04-21-2008 02:46 AM

Does anyone know the dif between T2 and T1. My report talks about T2 signal intensity and the standard multiple, numerous... have to love the fact I have a 1cm, and 9mm one and smallers. I have heard no one say they had a 1cm one.

I see Beauty thinks T2 are new ones and unhealed. Does that mean I may not have had this as long as I think? I have no mention of a T1.

Natalie8 04-21-2008 05:13 PM

Quote:

Originally Posted by RedPenguins (Post 263161)
I want PBP - Pretty Brain Pattern. I say that we start a campaign on that immediately....with all our spare energy. LOL :p

No, you didn't create more anxiety in me...I was having it already. I'm researching alternatives in case Ty doesn't work for me (but it will!!) - b/c I think knowing the information helps me when I have a panic-relapse! ;) This way when I begin to think "What if the Ty doesn't work" - then I can answer myself with, "Okay, I will do XXYYYYZZZ then."

My first Tysabri infusion was great - no complaints...was very easy (uh, yeah, I mean the infusion part - not the "getting to the infusion" part...but I think you read about that part!). I had some major fatigue afterwards and just felt like crud for a few days... but no other side effects directly related to the Tysabri (just the MS).

I'm not frightened of the Tysabri...the MS scares me more...so it was more than worth it to me to get on it. I agree that we can't rely on other people's disease experience...b/c we are all different...but it seems that with Ty, if it works for you, it REALLY works for you...and if it doesn't work, then it doesn't! The possible benefits of Ty far outweighed the risk. I think the problems with Ty have been over-sensationalized....but to be honest, I'd rather know of the possibilities....I just didn't let them scare me. Besides, the interferons scare me way more than the Ty. I go for my 2nd infusion at on May 2. I'm all prepared: ativan in one hand, benadryl in the other. Oh, and I guess I need some extra hands to carry my blankey!

BTW, I like small dogs...I just got a yorkie puppy for Xmas (sadly, she now lives with my best friend and her toddler....b/c I couldn't take care of her).

~Keri

I like Pretty Brain Pattern too. PBP sounds so much better than MS.
I am confident the Ty will work for you!! :) I feel better too when I have information at hand. But one thing I have learned with this diagnosis (which seems unlike anything else) is that there is a fine line between researching info that makes you feel more control of the situation and researching info that causes extreme panic. I have learned that there is a tipping point where I just need to stop - I'm just not always good at realizing when that tipping point is or maybe I just ignore it to torture myself. Sorry you had to give up your Yorkie puppy!

beautytransforming 04-21-2008 05:19 PM

Quote:

Originally Posted by Natalie8 (Post 263090)
Well according to this study it says about 78% of all people have at least one T1 hyperintense lesion. But 71% of those with SPMS had multiple T1 hyperintense lesions and only 46% of RRMS have multiple T1 hyperintense lesions.

The Mayo clinic said I had a "significant amount of T1 hyperintensities" on the notes for the second visit. What the hell does significant mean? But on the notes for the first visit the doctor wrote the two MRIs done at home show
"T2 hyperintense lesions with decreased T1 hypotensity and actually several black holes. There were more than nine lesions in periventricular, subcortical as well as around the corpus callosum that were in the right orientation location to suggest demyelinating disease. Several of these were enhancing in the initial MRI." Basically I'm confused.

I think this line in another abstract scared me: "Hyperintense MS plaques on T1-weighted MR images are common and associated with brain atrophy, disability, and advancing disease; a hyperintense lesion may be a clinically relevant biomarker."

Anyhow, Erin is probably right. I'm just torturing myself by doing all this reading. It just escalates the anxiety. :(
I don't see the neuro for another month.

So sorry - I did not ask today. I knew there was something I was forgetting. Bad Connie (Can I have a spanking now?). I have an atlas to MS. I am looking through it now.

For right now, don't borrow trouble. Just cause "most" ppl have it, doesn't mean "you" will.

When will you have another appt. Write down ALL questions. Like I said to someone else... demand answers. Be your own advocate, and be as informaed as possible. Bring up the articles you read, and tell them that you want answers.

But, for now, DON'T borrow trouble, we have enough being spoon fed to us... Go out, enjoy the sun, read a good book. Listen to the birds!!!

:hug:
Connie


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