Aa
Calling All Limbo-ers!!
Hey Everyone!
I know I haven't posted in a bit, but I just wanted to share my awful, ugly feelings about STILL being in Limbo! After having the MRI's last week (following strict MS protocol with and without contrast on a 3t machine) I found out today that the wonderful doctor's at the MS Clinic I went to said, "....at this point in time, MS is no longer at the top of my list of differentials."
Long story short, I STILL have NO answers! I GIVE UP!! I know that several of you have been here/done that, but I can't do this anymore! I know I should be seriously happy that I have not once been told, "it's all in your head", or "you're crazy", etc....But, I still can't take anymore NON-answers!!! It was explained to and justified that, "Yes, Tammy, you have a serious Neurological condition, we just don't know what it is yet", but it seems that every time I get "non-answers" it chisles away at my soul piece by horrible piece.....I seriously don't know if I have anything left to fight with.....
OMG, I sound so pathetic!!!
Anyway, the MS Clinic is done with me....Dr. K notes at the bottom that they are, "looking forward to hearing from you (OTF) regarding this extrememly interesting patient.....(IF I'm so damn interesting, why not study me and help me find out WTF is going on???)
I know eventually they'll figure this out, but I just don't want it to be on the autopsy table!! (in years and years from now, of course!! )
I seriously feel bad for those limbo-ers that have no lesions and no positive tests to fall back on....I have "extensive white matter lesions in the subcortical, frontal, parietal lobes AND periventricular area..." I also have positive Babinski on both feet, positive Romberg's, and several other neurological deficits too many to mention. All this and I'm still answer-less! FFS!!
Thanks for letting me vent everyone.......I'm about to lose my already scattered mind......
Love to you all!
Tammy
I know I haven't posted in a bit, but I just wanted to share my awful, ugly feelings about STILL being in Limbo! After having the MRI's last week (following strict MS protocol with and without contrast on a 3t machine) I found out today that the wonderful doctor's at the MS Clinic I went to said, "....at this point in time, MS is no longer at the top of my list of differentials."
Long story short, I STILL have NO answers! I GIVE UP!! I know that several of you have been here/done that, but I can't do this anymore! I know I should be seriously happy that I have not once been told, "it's all in your head", or "you're crazy", etc....But, I still can't take anymore NON-answers!!! It was explained to and justified that, "Yes, Tammy, you have a serious Neurological condition, we just don't know what it is yet", but it seems that every time I get "non-answers" it chisles away at my soul piece by horrible piece.....I seriously don't know if I have anything left to fight with.....
OMG, I sound so pathetic!!!
Anyway, the MS Clinic is done with me....Dr. K notes at the bottom that they are, "looking forward to hearing from you (OTF) regarding this extrememly interesting patient.....(IF I'm so damn interesting, why not study me and help me find out WTF is going on???)
I know eventually they'll figure this out, but I just don't want it to be on the autopsy table!! (in years and years from now, of course!! )
I seriously feel bad for those limbo-ers that have no lesions and no positive tests to fall back on....I have "extensive white matter lesions in the subcortical, frontal, parietal lobes AND periventricular area..." I also have positive Babinski on both feet, positive Romberg's, and several other neurological deficits too many to mention. All this and I'm still answer-less! FFS!!
Thanks for letting me vent everyone.......I'm about to lose my already scattered mind......
Love to you all!
Tammy
Kristen
Your support never comes too late, my friend! Thanks for the encouragement and kind words....
I'm just taking a break from all this stuff because if I don't, I will surely go insane!! (Maybe I'm already there???)
I am also sorry that your latest test results won't do anything to help get you closer to a dx! ************!!!!
Laura Thanks again for your support as well....I know how much you have been going through and it warms my heart that you take time out to help me and others!!
HUGE HUGS to you both!!
Tammy :)
Your support never comes too late, my friend! Thanks for the encouragement and kind words....
I'm just taking a break from all this stuff because if I don't, I will surely go insane!! (Maybe I'm already there???)
I am also sorry that your latest test results won't do anything to help get you closer to a dx! ************!!!!
Laura Thanks again for your support as well....I know how much you have been going through and it warms my heart that you take time out to help me and others!!
HUGE HUGS to you both!!
Tammy :)
Hola,
I am so sorry I missed out on the cursing but I am also sorry I am late to give you some support!!
I know this whole thing bites and we have absolutely no control over not only how our disease progresses but also on whether we ever get real answers. I have been lurking and a bit upset too as i found out my LP was negative for O bands and my IgG was normal.
It is so hard to keep trying to move forward without answers. The only thing that keeps me from totally loosing my mind is the support of this forum and people like you. I wish I had more I could do for you.
Keep that sense of humor going and I will kep praying for you!!
Love and Hugs!
Kristin
I am so sorry I missed out on the cursing but I am also sorry I am late to give you some support!!
I know this whole thing bites and we have absolutely no control over not only how our disease progresses but also on whether we ever get real answers. I have been lurking and a bit upset too as i found out my LP was negative for O bands and my IgG was normal.
It is so hard to keep trying to move forward without answers. The only thing that keeps me from totally loosing my mind is the support of this forum and people like you. I wish I had more I could do for you.
Keep that sense of humor going and I will kep praying for you!!
Love and Hugs!
Kristin
Even in all the **** there is always something good that comes out of these rants. I had never heard of Shy-Drager and now I know more, thanks to you and the Mayo clinic website. I will certainly hope that one moves back down the list.
Be well,
Laura
Be well,
Laura
You guys crack me up with all of this ****** cursing!!! LOLOLOLOL....
Thanks, I needed that.........I am feeling much better this morning although this *** anger won't dissipate this time!! If there's anything I hate the most, it's anger! ****!!!
Anyway, I just wanted to thank everyone again for their humor, support, hugs and good thoughts.....You are all appreciated more than words can express....
I think I will seriously take your advice and relax...relax....relax....Rena, wanna go fishing again??? I haven't done that since I was a kid, but I could sure use some R&R!
QUIX:
Thanks for being angry with me, too.....Here's my differential diagnosis:
1) Shy Drager
2)
3)
4)
5)
6)
7)
8)
9)
10) ALS (brought this up twice)
11)
12)
.
.
....
796) MS
etc....etc....
The doc at the MS clinic actually wrote that ..."At this point MS is no longer at the top of the list of my differentials. Unfortunately, I do not have substantial evidence to
offer an alternative diagnosis either."
He then goes on to talk about "rare" autoimmune disorders again that have an extensive
neurological component....
NOTHING! Couldn't have even shot a dart at a dartboard labelled with diseases just for ***** and giggles??? Oh Well, I guess it's called an MS Clinic for a reason.....
Thanks again, everyone....
HUGS!!
Tammy :)
Thanks, I needed that.........I am feeling much better this morning although this *** anger won't dissipate this time!! If there's anything I hate the most, it's anger! ****!!!
Anyway, I just wanted to thank everyone again for their humor, support, hugs and good thoughts.....You are all appreciated more than words can express....
I think I will seriously take your advice and relax...relax....relax....Rena, wanna go fishing again??? I haven't done that since I was a kid, but I could sure use some R&R!
QUIX:
Thanks for being angry with me, too.....Here's my differential diagnosis:
1) Shy Drager
2)
3)
4)
5)
6)
7)
8)
9)
10) ALS (brought this up twice)
11)
12)
.
.
....
796) MS
etc....etc....
The doc at the MS clinic actually wrote that ..."At this point MS is no longer at the top of the list of my differentials. Unfortunately, I do not have substantial evidence to
offer an alternative diagnosis either."
He then goes on to talk about "rare" autoimmune disorders again that have an extensive
neurological component....
NOTHING! Couldn't have even shot a dart at a dartboard labelled with diseases just for ***** and giggles??? Oh Well, I guess it's called an MS Clinic for a reason.....
Thanks again, everyone....
HUGS!!
Tammy :)
Okay. MS is not at the top of their differential diagnosis. THEN WHAT IS? Do they even have a DDx? Just tell us the next three things so we know what general road they are going down?
What kind of medicine is this that they have a list of one thing. That is not longer on it, so these brilliant people have a differential diagnosis of ZERO?
p**&$@+$*(_*_)@*$)@!)!_$*&&#^^$*@* BRATHE *)&*%$^*$_)*)&%(@_!+
What kind of medicine is this that they have a list of one thing. That is not longer on it, so these brilliant people have a differential diagnosis of ZERO?
p**&$@+$*(_*_)@*$)@!)!_$*&&#^^$*@* BRATHE *)&*%$^*$_)*)&%(@_!+
Wow~ This is a ****************great thread!!!! I love all of you and you never fail to make a ******************situation tolerable thru your love, support and humor.
Take care Tammy and my heart and prayers are with you! You can't lose if you stay here with these awesome people!!!
Have a ***************** great day!!
Hugs
doni
Take care Tammy and my heart and prayers are with you! You can't lose if you stay here with these awesome people!!!
Have a ***************** great day!!
Hugs
doni
Tammy,
It seems we have run out of ****ng ways to use the ****** key, so I'll clean it up here instead. You were one of the first people to reach out to me when I showed up here this last month with this looming MS dx. I have no idea what I am facing medically but I knew instantly that I would find help in figuring it out from you and the other wonderful members of this community.
Your rant tonight makes so much sense to me when I take out all the medical jargon, which is still not a part of my vocabulary. I've just spent these months since January in heart limbo with no resolution and now I have MS limbo put on top of that!
Here's a favorite rant/temper tantrum that I found recently. It is on a sarcoidosis board that I looked at because my neuro mentioned that as a MS mimic possibility. It is a good old-fashioned kick in the rump - I hope you read it and maybe it will put a smile on your face and make you agree it could always be worse.
http://www.inspire.com/groups/stop-sarcoidosis/journal/john-wayne-is-dead-a nd-oprah-is-busy/
Take a break from us and come back when you're ready, but it better not be too ****ng long, you hear?
My best to you,
Laura
It seems we have run out of ****ng ways to use the ****** key, so I'll clean it up here instead. You were one of the first people to reach out to me when I showed up here this last month with this looming MS dx. I have no idea what I am facing medically but I knew instantly that I would find help in figuring it out from you and the other wonderful members of this community.
Your rant tonight makes so much sense to me when I take out all the medical jargon, which is still not a part of my vocabulary. I've just spent these months since January in heart limbo with no resolution and now I have MS limbo put on top of that!
Here's a favorite rant/temper tantrum that I found recently. It is on a sarcoidosis board that I looked at because my neuro mentioned that as a MS mimic possibility. It is a good old-fashioned kick in the rump - I hope you read it and maybe it will put a smile on your face and make you agree it could always be worse.
http://www.inspire.com/groups/stop-sarcoidosis/journal/john-wayne-is-dead-a nd-oprah-is-busy/
Take a break from us and come back when you're ready, but it better not be too ****ng long, you hear?
My best to you,
Laura
I suppose snapping you with a wet towel until you feel like fighting is out of the question. That was considered "fun" with my siblings, that and rubber band fights (we each had a paper route at one time or another).
I have a feeling you'll be out swinging with a hockey stick in no time. OK, humor aside.
You take your time to feel what you're feeling; don't waste your energy wading back into the fight before you're ready. Save your energy for taking care of you, in the mean time.
And have some fun, too.
You know I'm feeling defeated, too. Whipped. I'm going out to watch the LPGA golf tournament at Columbia Edgewater Country Club tomorrow, then in the evening I'll be going to watch the University of Portland Pilots women's soccer match. I'm going to smile and breathe fresh air and have a good time (even if it kills me, lol). If I get tired, I'll go lie on the grass somewhere and watch the clouds float by.
I hope that we both recharge our batteries quickly.
One more hug...
Kathy
I have a feeling you'll be out swinging with a hockey stick in no time. OK, humor aside.
You take your time to feel what you're feeling; don't waste your energy wading back into the fight before you're ready. Save your energy for taking care of you, in the mean time.
And have some fun, too.
You know I'm feeling defeated, too. Whipped. I'm going out to watch the LPGA golf tournament at Columbia Edgewater Country Club tomorrow, then in the evening I'll be going to watch the University of Portland Pilots women's soccer match. I'm going to smile and breathe fresh air and have a good time (even if it kills me, lol). If I get tired, I'll go lie on the grass somewhere and watch the clouds float by.
I hope that we both recharge our batteries quickly.
One more hug...
Kathy
Honey...all you have to do is stick around here and I am sure that some poor soul is going to get ******* royally and it's just the ******* thing you will need to get your dander up and your panties in a knot and before you know it...THE FIGHT IS BACK because you (well all of us) have to get soooo P***** off that we have to fight back!
Don't worry honey...take the weekend off and I am sure by Monday some idiot neuro will have come along to mess another of our members lives and your blood pressure will be back to "normal"? hehe In the meantime...don't fight it honey..relax and do something you love to do and forget about all of this for a few days...it is really rather cleansing honey and I think we all need to do this occasionally!
Lots of Hugs,
Rena
Don't worry honey...take the weekend off and I am sure by Monday some idiot neuro will have come along to mess another of our members lives and your blood pressure will be back to "normal"? hehe In the meantime...don't fight it honey..relax and do something you love to do and forget about all of this for a few days...it is really rather cleansing honey and I think we all need to do this occasionally!
Lots of Hugs,
Rena
I'm just sitting here wondering how long does it take for the "fight" to come back.....I am feeling so defeated......
ARGH!!!!
ARGH!!!!
I am impressed with how, as bad as Tammy felt when she started this thread, that with the help of some friends, she has managed to bring out her ******* humor.
CLAP CLAP to all of you for helping a dear friend in need.
That brings tears to my ********* eyes!
Love to all...and of course to you Wingster,
Wanna :o)
CLAP CLAP to all of you for helping a dear friend in need.
That brings tears to my ********* eyes!
Love to all...and of course to you Wingster,
Wanna :o)
Rena, thanks for your comments....I know that you know of all people how frustrating this can be, having been dx'd twice and still being jerked around! That makes me so mad!! Glad you enjoyed your trip, though! :)
Bio: Don't **** worry about all those ***** asterisks....It's ********** ok with me that you want to ****** say those ****** things....LOL
By the way, I totally agree with the ALS thing.....He has only mentioned it once, but that **** Shy Drager thing is ****** ugly....
Thanks, guys!!
Tammy (the ****** Life Long Limbo-er) Just call me LLL...
PS---FYI--those asterisks were my attempt at being humorous.....
Bio: Don't **** worry about all those ***** asterisks....It's ********** ok with me that you want to ****** say those ****** things....LOL
By the way, I totally agree with the ALS thing.....He has only mentioned it once, but that **** Shy Drager thing is ****** ugly....
Thanks, guys!!
Tammy (the ****** Life Long Limbo-er) Just call me LLL...
PS---FYI--those asterisks were my attempt at being humorous.....
Wow, all those asterisks make it look like I've got a serious potty mouth. Sorry. ;)
Tammy, what did the MRI results say?
Seems like you'd know by now pretty surely if you had ALS.
It *****, but at least you've got OTF who's doing tests, etc, instead of this piecemeal **** some people have to deal with. I'm sorry that Shy-Drager is being mentioned; that must be scary. I do hope they come up with an answer soon, and one that isn't catastrophic.
Bio
Seems like you'd know by now pretty surely if you had ALS.
It *****, but at least you've got OTF who's doing tests, etc, instead of this piecemeal **** some people have to deal with. I'm sorry that Shy-Drager is being mentioned; that must be scary. I do hope they come up with an answer soon, and one that isn't catastrophic.
Bio
So sorry to hear you are hitting a crater in the horrible road to a diagnosis and I hope that this doesn't continue for you and you will get somewhere soon! I can relate in a way even though I have had a diagnosis twice. Sometimes a break from the whole thing can do us good too as I have found with my fishing. We all know that we can't give up because the only one that would hurt would be us and things don't get better that way but a good break doing something you really enjoy just might be the ticket my dear. I will be thinking about you and keep us updated as to what is going on ok?
Lots of Hugs,
Rena
Lots of Hugs,
Rena
Thanks Diz Wiz!!
You know already how I feel about all this and you're right, It S-U-C-K-S!!
Not to mention, you are so right about the &&^&%$&&##@!!! thingy.....
Love ya Diz!
Tamzle
You know already how I feel about all this and you're right, It S-U-C-K-S!!
Not to mention, you are so right about the &&^&%$&&##@!!! thingy.....
Love ya Diz!
Tamzle
%*&)(@*)***$&!(_))#***@)*(*&&(@#)(*_)!)*#)(*($&)(&^$)()
I really don't know what else to say. It just *****!!!!
Love and ((((HUGE HUGS))))
Wanna :o)
I really don't know what else to say. It just *****!!!!
Love and ((((HUGE HUGS))))
Wanna :o)
Thanks for your comments, everyone,....I appreciate them....I really do.....
As far as the MS dx, I wasn't really told about the "why's" and "why nots"....I am thinking it has to do with the exact location and size of the lesions....??? Oddly enough, I guess I am still very trusting in doctors because I am taking them at their word....
I think the thing that depresses me the most is that the MS Clinic has given up after putting MS on the bottom of the list....As some of you know, I haven't really thought I had MS anyway....I guess they have no choice but to give me back to OTF....If I'm being totally honest with myself, he HAS gone above and beyond as far as testing goes...
Also, like I've said in previous posts, I don't care what it is, I just want a name and some possible treatment so that I can move on.....
I have also said this several times before, but an UGLY thing called Shy Drager has been on the table since January, but is difficult to dx like everything else....I actually fit several sx's of Shy Drager, but I guess it has to get worse before they can "call" it.....That's okay, I don't want that anyway....(LMAO! Like I have a choice!!)
Kathy: Thanks for the hugs and support....Give it time, your answers will come....I just know they will
Mokster: I did get your email and I'll email you back soon....I think I need to nap....Thanks so much for being there for me, Mok! Your friendship means the world to me!
Wobbly: I have been my own research (like we all do) and have come up with at least 100 different neurological conditions that fit with me....It's too overwhelming for my brain so I just gave up on that too....OTF has mentioned Shy Drager (or MSA), ALS, (YUCK!) and a few others that come pretty close....
Thanks again, ladies......You're all in Limbo with me and as selfish as it sounds, it's nice to know that I'm not alone.....
Love you guys!
HUGS!
Tammy
As far as the MS dx, I wasn't really told about the "why's" and "why nots"....I am thinking it has to do with the exact location and size of the lesions....??? Oddly enough, I guess I am still very trusting in doctors because I am taking them at their word....
I think the thing that depresses me the most is that the MS Clinic has given up after putting MS on the bottom of the list....As some of you know, I haven't really thought I had MS anyway....I guess they have no choice but to give me back to OTF....If I'm being totally honest with myself, he HAS gone above and beyond as far as testing goes...
Also, like I've said in previous posts, I don't care what it is, I just want a name and some possible treatment so that I can move on.....
I have also said this several times before, but an UGLY thing called Shy Drager has been on the table since January, but is difficult to dx like everything else....I actually fit several sx's of Shy Drager, but I guess it has to get worse before they can "call" it.....That's okay, I don't want that anyway....(LMAO! Like I have a choice!!)
Kathy: Thanks for the hugs and support....Give it time, your answers will come....I just know they will
Mokster: I did get your email and I'll email you back soon....I think I need to nap....Thanks so much for being there for me, Mok! Your friendship means the world to me!
Wobbly: I have been my own research (like we all do) and have come up with at least 100 different neurological conditions that fit with me....It's too overwhelming for my brain so I just gave up on that too....OTF has mentioned Shy Drager (or MSA), ALS, (YUCK!) and a few others that come pretty close....
Thanks again, ladies......You're all in Limbo with me and as selfish as it sounds, it's nice to know that I'm not alone.....
Love you guys!
HUGS!
Tammy
Oh no here we go again, I'm sorry you have to go through that again... It's not easy going though all the appt and tests just to be told...it doesn't show anything???
Why do they not Dx you with all that postive stuff?? Have you not had changes in your MRI? Is that their reasoning?? I'm not sure how they could say it's not MS...did they say more on that?
are their other Neurological Dx to look at...ask you Dr...with those neurological findings...you might have something other then MS? Sorry, I have no ideas...not a Dr... but ask and let us know what they say.
This is just another one you have to deal with..hang in there..we are ALL Limbolanders and Dx friends here for each other.
take care
andi
Why do they not Dx you with all that postive stuff?? Have you not had changes in your MRI? Is that their reasoning?? I'm not sure how they could say it's not MS...did they say more on that?
are their other Neurological Dx to look at...ask you Dr...with those neurological findings...you might have something other then MS? Sorry, I have no ideas...not a Dr... but ask and let us know what they say.
This is just another one you have to deal with..hang in there..we are ALL Limbolanders and Dx friends here for each other.
take care
andi
Oh hon, I'm so sorry that this happened to you. I've emailed you but just wanted to answer your post to let you know I'm here for you.
I'm not understanding how you don't fit the criteria for MS. Did he explain to you why MS is ruled out?
I'm here in limbo with you hon, we'll help each other keep our scattered minds together!!!!
Love and Hugs
Mokster
I'm not understanding how you don't fit the criteria for MS. Did he explain to you why MS is ruled out?
I'm here in limbo with you hon, we'll help each other keep our scattered minds together!!!!
Love and Hugs
Mokster
Don't lose that mind! It's too good to waste!
I'm sorry. Really, really, really sorry. I know how bad this *****. I know the fingernails -on-the-chalkboard screaming in the brain feeling that comes from being told again and again that there is no answer for you.
You aren't pathetic; all these doctors that can't figure out what's going on with you are!
As I believe it was Quix said in the past, "DON'T LET THEM SUCK YOUR SOUL!" or words to that effect.
Hang on, hang out, do what makes you feel better (if it's legal and safe), and then, when you're ready, continue your quest for answers. Please. You deserve them. Before that table years and years from now.
Bunches of hugs and love,
Kathy
I'm sorry. Really, really, really sorry. I know how bad this *****. I know the fingernails -on-the-chalkboard screaming in the brain feeling that comes from being told again and again that there is no answer for you.
You aren't pathetic; all these doctors that can't figure out what's going on with you are!
As I believe it was Quix said in the past, "DON'T LET THEM SUCK YOUR SOUL!" or words to that effect.
Hang on, hang out, do what makes you feel better (if it's legal and safe), and then, when you're ready, continue your quest for answers. Please. You deserve them. Before that table years and years from now.
Bunches of hugs and love,
Kathy
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