Talk Cancer

Question:

MsWompa observed: > I too was dx with conversion disorder… maybe we should start > a fan club.   However, I found a neuro who would listen to me. > Yes I had Negative MRI’s but with 3 distinct areas of demylenation > spread out over a couple of months.  I was dx with MS.  Boy it’s a > sick world when we are excited that we have been dx with a > chronic disease.

AMEN!  I have an upper spine/neck MRI and head MRI (both with enhancements) scheduled for today.  I *really* hope something will show up … cause I sure don’t want to head into another bout of this stuff.  What I really want is to be able to manage this.  And that takes a DX. Regards, =jbf= John B. Fisher

Response:

Well hi John, good luck with your MRI’s today! I hope you won’t be too tired afterwards. I will do just the same (+ gadolinium) as on Tuesday and Wednesday! Not in one day, cause my neuro said it would tire me too much holding still for so long, as this is difficult with my jerking, vibrating body. And I will have some different bloodwork done. I will know something more on the 26th (I hope), when I have to talk with him. I will X my fingers for you, please X yours too? I will think of you today… Best wishes, Lili John B. Fisher ha scritto nel messaggio … >AMEN!  I have an upper spine/neck MRI and

head MRI (both with enhancements) >scheduled for today.  I *really* hope

something will show up … cause I >sure don’t want to head into another bout of

this stuff.  What I really want – Hide quoted text — Show quoted text ->is to be able to manage this.  And that takes a DX. >Regards, >=jbf= >John B. Fisher

Response:

Hi Werner, well first wait what your neuro may say and then if you’re not happy with his opinion, change neuro! These symptoms must come from something and surely it isn’t all in your head! Good luck tomorrow and keep us informed! Ciao, Lili "Werner M. Mayer" ha scritto nel messaggio <37396C72.91259…@fen.baynet.de>… > snipper < >the past, and a talk coming up tomorrow with

my neuro who believes "it’s >all on my mind". >I already have an official diagnosis of

conversion disorder and it is >darned hard to get the neuro of the diagnosis

with no proovable evidence >:( >Do any of you have any idea what else can be done? >My symptoms so far: >I am a wheely, I cant move my legs, normally my legs have are >unsensitive the more I go down to the toes… >At the moment, what started out from the left

side has taken control of >my whole body as well. I have lost control of

my stability and balance, >I have a feeling that I am wearing some kind

of clothing underneath my >skin, like a scuba diving suit and have a

mask on my face and the scuba >suit pulled over my head as well. >I feel like sitting in a bowl of pudding, the

inner sensitivity of >almost all the body is gone. My left arm is

feeling like hung on wire >with counter weights for stability, the only

thing working thing is >right arm and my vision. >My skin feels as if it isnt there when I

touch my belly, etc. >Now am I really imagining things or what else

other than MS could it be? >I do realize it could be lyme and I’ll try on

that one tomorrow, but – Hide quoted text — Show quoted text ->what else? >I’m not a doctor, just a interested possible MS’er with a wrong >diagnosis, >trying to work out whats wrong this time. >Bye, Werner. >– >Shortcut: http://i.am/wmm  (only in german at this time) >Empty subject, richtext, vcard, HTML messages > /dev/null (MS$=nul:)

Response:

Lilian Piattini wrote: > I will X my fingers for you, please X yours too? > I will think of you today…

Lili, sure, you’ll be in my thoughts and prayers today. Regards, =jbf= John B. Fisher

Response:

hi john & lili – i will X my fingers for both of you!   …deb —————— In article <7hbqom$ja…@pollux.ip-plus.net>,   "Lilian Piattini" <Lili.Piatt…@ticino.com> wrote: – Hide quoted text — Show quoted text -> Well hi John, > good luck with your MRI’s today! > I hope you won’t be too tired afterwards. > I will do just the same (+ gadolinium) as on > Tuesday and Wednesday! > Not in one day, cause my neuro said it would > tire me too much holding still for so long, as > this is difficult with my jerking, vibrating > body. And I will have some different bloodwork > done. > I will know something more on the 26th (I > hope), when I have to talk with him. > I will X my fingers for you, please X yours > too? > I will think of you today… > Best wishes, > Lili > John B. Fisher ha scritto nel messaggio … > >AMEN!  I have an upper spine/neck MRI and > head MRI (both with enhancements) > >scheduled for today.  I *really* hope > something will show up … cause I > >sure don’t want to head into another bout of > this stuff.  What I really want > >is to be able to manage this.  And that takes > a DX. > >Regards, > >=jbf= > >John B. Fisher

–== Sent via Deja.com http://www.deja.com/ ==– —Share what you know. Learn what you don’t.—

Response:

In article <7hbp8j$se…@nnrp1.deja.com>, Debra Self <wvtranspl…@ij.net> writes: >hi – excited?  more like relieved that i wasn’t crazy nor >was it brain cancer.  then the reality set in.  hard.  i still >find myself trying to disprove the diagnosis cause i don’t >want it.  somewhere over some rainbow…  but it is & it >won’t go away.  i wish & i wish.  but i was relieved to >know there was a name for what was wrong with me.

I told my doc "hell, I’d rather be crazy".  I really WANTED him to tell me it was all in my head because it was such a devastating diagnosis. Kathi.

Response:

Hi Werner! << with my neuro who believes "it’s all on my mind". >> I think it’s time to get a new neuro!  I wish I had saved this post, but somebody else had the same "it’s all in your head" garbage from a doctor.  Then a psychaitrist told him/her that symptoms like that being caused mentally are very, very rare. I think they tell you "it’s all in your head" when they can’t put a finger on what’s wrong with you.  Over a hundred years ago, MS was called the "faker’s disease" because doctors couldn’t figure out what was going on. This may not be MS you are experiencing, but it sounds like some physical problem.  And the sooner you find out what it is, the sooner they can start treating it. Best of luck with this! Sylvia

Response:

Hi Deb! << excited?  more like relieved that i wasn’t crazy nor was it brain cancer.  then the reality set in. >> You and others make me feel "lucky."  I went from waking up with my side "asleep" on a Sunday, waiting for it to go away for a week, seeing a neuro on the following Monday, going into the hospital for tests that Wednesday, and that Friday. . .hey, guess what?  You have MS! I had feared a stroke because they "run" in my family, but the numbness crossed over from the left side of my body to the right side of my face.  I couldn’t figure that one out! I feel "lucky" because I didn’t have to wait so long to find out what was wrong with me.  Not that I like it!  I don’t remember any "relief," just a numb mind to match my numb body. Sorry to hear you’re feeling down.  Depression doesn’t help anything, that’s for sure.  I don’t know about your liver enzymes test results; they never tell me what I "scored," just that I’m doing okay.  I think that if you were having problems, they’d let you know so they could adjust your medications, so that was good news. Take care! Sylvia  

Response:

In article <37396C72.91259…@fen.baynet.de>, Werner.Ma…@FEN.BAYNET.DE ("Werner M. Mayer") wrote:

| Now am I really imagining things or what else other than MS could it be? | I do realize it could be lyme and I’ll try on that one tomorrow, but | what else? | I’m not a doctor, just a interested possible MS’er with a wrong | diagnosis, | trying to work out whats wrong this time. | Hi Werner, Sorry to hear of your problems. Lack of a good diagnosis procedure has been a problem for many of us with MS. One approach that has been tried is to visit a psychiatrist and have him/her dispell the diagnosis of ‘conversion disorder’. This should force the neurologist back to work. Hope this helped. — Take care James (#11)

Response:

hi sylvia –  hey you did get a quick one.  sylvia, i had ON at 9 years old and my parents took me to lots of eye dr’s trying to convince themselves, i guess, that the problem was in the eye, not the brain, as they were told. and it was an up-hill battle since. lots of things happened thru teen years & then after childbirth, no legs, so at 21 i was told it could be ms.  that was my first spinal tap, so i thought no more pregnancy, no more ms.  wrong. thanks to the almighty MRI and a bout with bulbar palsy, at 35 i got a definitve diagnosis.  and wouldn’t you know the tap that day showed MBP. i’m 41 now.  i thank God i’m here.  it’s just i had this question all my life & "i knew", but when i was told, it was like 3 mountains had been lifted off me.  i knew i wasn’t crazy.  i cried. so did doc.  i’m glad to hear you didn’t have to live the nightmare.  i’m sorry you have ms.  at least you don’t have to spend half your life looking for a dx.  everyone’s walk in life is so different, isn’t it?  hi sylvia –  hey you did get a quick one. sylvia, i had ON at 9 years old and my parents took me to lots of eye dr’s trying to convince themselves, i guess, that the problem was in the eye, not the brain, as they were told. and it was an up-hill battle since. lots of things happened thru teen years & then after childbirth, no legs, so at 21 i was told it could be ms.  that was my first spinal tap, so i thought no more pregnancy, no more ms.  wrong.  thanks to the almighty MRI and a bout with bulbar palsy, at 35 i got a definitve diagnosis.  and wouldn’t you know the tap that day showed MBP. i’m 41 now.  i thank God i’m here.  it’s just i had this question all my life & "i knew", but when i was told, it was like 3 mountains had been lifted off me.  i knew i wasn’t crazy.  i cried. so did doc.  i’m glad to hear you didn’t have to live the nightmare.  i’m sorry you have ms.  at least you don’t have to spend half your life looking for a dx. everyone’s walk in life is so different, isn’t it?  …deb In article <19990512103006.10380.00001…@ng23.aol.com>,   syl…@aol.com (SYLV77) wrote: – Hide quoted text — Show quoted text -> Hi Deb! > << excited?  more like relieved that i wasn’t crazy nor > was it brain cancer.  then the reality set in. >> > You and others make me feel "lucky."  I went from waking up with my side > "asleep" on a Sunday, waiting for it to go away for a week, seeing a neuro on > the following Monday, going into the hospital for tests that Wednesday, and > that Friday. . .hey, guess what?  You have MS! > I had feared a stroke because they "run" in my family, but the numbness crossed > over from the left side of my body to the right side of my face.  I couldn’t > figure that one out! > I feel "lucky" because I didn’t have to wait so long to find out what was wrong > with me.  Not that I like it!  I don’t remember any "relief," just a numb mind > to match my numb body. > Sorry to hear you’re feeling down.  Depression doesn’t help anything, that’s > for sure.  I don’t know about your liver enzymes test results; they never tell > me what I "scored," just that I’m doing okay.  I think that if you were having > problems, they’d let you know so they could adjust your medications, so that > was good news. > Take care! > Sylvia

–== Sent via Deja.com http://www.deja.com/ ==– —Share what you know. Learn what you don’t.—

Response:

Hi James! James Bridges wrote: > In article <pZEV2.3033$OY4.936…@news3.mco>, "John B. Fisher" > <john_b_fis…@bellsouth.net> wrote: > | So, here’s the question:  "How far should I go – hunting for a DX ?"  Making > Next, find a capable neurologist (and neuro-opthamologist), both of whom > you can talk, and press for a diagnosis! (This couild still take a long > time – don’t let them strand you on the sandbar of ‘conversion disorder’)

I am in the problem having severe ms symptoms, an exaberation going on at the moment neurological peripheral tests showing up nothing, head MRT today again negative, spinal tap not being done as it was negative in the past, and a talk coming up tomorrow with my neuro who believes "it’s all on my mind". I already have an official diagnosis of conversion disorder and it is darned hard to get the neuro of the diagnosis with no proovable evidence Do any of you have any idea what else can be done? My symptoms so far: I am a wheely, I cant move my legs, normally my legs have are unsensitive the more I go down to the toes… At the moment, what started out from the left side has taken control of my whole body as well. I have lost control of my stability and balance, I have a feeling that I am wearing some kind of clothing underneath my skin, like a scuba diving suit and have a mask on my face and the scuba suit pulled over my head as well. I feel like sitting in a bowl of pudding, the inner sensitivity of almost all the body is gone. My left arm is feeling like hung on wire with counter weights for stability, the only thing working thing is right arm and my vision. My skin feels as if it isnt there when I touch my belly, etc. Now am I really imagining things or what else other than MS could it be? I do realize it could be lyme and I’ll try on that one tomorrow, but what else? I’m not a doctor, just a interested possible MS’er with a wrong diagnosis, trying to work out whats wrong this time. Bye, Werner. — Shortcut: http://i.am/wmm  (only in german at this time) Empty subject, richtext, vcard, HTML messages > /dev/null (MS$=nul:)

Response:

- Hide quoted text — Show quoted text ->I am in the problem having severe ms symptoms, an exaberation going on >at the moment neurological peripheral tests showing up nothing, head MRT >today again negative, spinal tap not being done as it was negative in >the past, and a talk coming up tomorrow with my neuro who believes "it’s >all on my mind". >I already have an official diagnosis of conversion disorder and it is >darned hard to get the neuro of the diagnosis with no proovable evidence >:( >Do any of you have any idea what else can be done? >My symptoms so far: >I am a wheely, I cant move my legs, normally my legs have are >unsensitive the more I go down to the toes… >At the moment, what started out from the left side has taken control of >my whole body as well. I have lost control of my stability and balance, >I have a feeling that I am wearing some kind of clothing underneath my >skin, like a scuba diving suit and have a mask on my face and the scuba >suit pulled over my head as well. >I feel like sitting in a bowl of pudding, the inner sensitivity of >almost all the body is gone. My left arm is feeling like hung on wire >with counter weights for stability, the only thing working thing is >right arm and my vision. >My skin feels as if it isnt there when I touch my belly, etc. >Now am I really imagining things or what else other than MS could it be? >I do realize it could be lyme and I’ll try on that one tomorrow, but >what else? >I’m not a doctor, just a interested possible MS’er with a wrong >diagnosis, >trying to work out whats wrong this time. >Bye, Werner. >–

W, I too was dx with conversion disorder… maybe we should start a fan club. However, I found a neuro who would listen to me.  Yes I had Negative MRI’s but with 3 distinct areas of demylenation spread out over a couple of months.  I was dx with MS.  Boy it’s a sick world when we are excited that we have been dx with a chronic disease. j

Response:

hi – excited?  more like relieved that i wasn’t crazy nor was it brain cancer.  then the reality set in.  hard.  i still find myself trying to disprove the diagnosis cause i don’t want it.  somewhere over some rainbow…  but it is & it won’t go away.  i wish & i wish.  but i was relieved to know there was a name for what was wrong with me.   don’t mind me guys.  i’ve been really down & not getting up anymore.  some depression added to this cocktail makes it more volatile.   i have had good news this week… liver enzymes tested at 17.  least i think that’s good.  take care.   …deb –== Sent via Deja.com http://www.deja.com/ ==– —Share what you know. Learn what you don’t.—

Response:

This wonderful "all in your head" thing is exactly what Tony is going through. So we’re going to call them on it — I’m going to set up an appointment for him with the psychiatrist that treats our son for ADHD to get his honest opinion. (I figure after working with him for 5+ years, he should know my husband well enough to tell if it’s in his head or not!) We’re also going to check out our local Muscular Dystrophy clinic in a couple of weeks – they said they might be able to narrow things down, specifically as to whether we’re dealing with either MS or Myasthenia. No stone will be left unturned!  Boulders, maybe, but stones definitely!  :) Blessings, Carolynn "I can do all things through Christ who strengthens me"  Phil. 4:13

Response:

Hi John, Oh, I’m sorry you had such inconvenience. Grrrrrr. I can well imagine that you had trouble walking, cause for me it wouldn’t be any different. I only hobble & wobble & limp, so…. And I *don’t* like obnoxious persons! Wish you well for tomorrow, X-ing limbs, Lili P.S: my MRI’s are on the 18th & 19th. (I don’t have to hobble that much in the hospital). Perhaps I can’t always post, or lurk, cause I’ve got some Dutch relatives over at my home so I’m rather busy. But I will think of you all also when I’m not present here on the NG. John B. Fisher ha scritto nel messaggio … >Ha!  Long story, but short answer is that

it’s scheduled for this upcoming >Friday (4/14) in the afternoon.  Normally I

like working with this hospital. >Today they outdid themselves — the wrong

way!!  I have trouble walking >(noticable limp) due to these symptoms and

found I had to walk several >’blocks’ distance to shuffle from one

location to another and back again. >On top of that I had to deal with a really

obnoxious person behind the >admitting desk.  Arrgh.  Hopefully, Friday

will go better than today. – Hide quoted text — Show quoted text ->> Keep us informed. >Lili, I sure will.  Hope your MRIs went well than today. >Regards, >=jbf= >John B. Fisher

Response:

Hi Carolynn, Well I just want to wish good luck to you both. I will surely X my limbs for you and I hope things will work out better than they did before. Think it’s a good idea to see the psychiatrist you already know for such a long time and surely also the clinic could shed some light on all the problems Tony has gone through. Take care! Lili Carolnovi ha scritto nel messaggio <19990513081754.13738.00000…@ng-cs1.aol.com> … >This wonderful "all in your head" thing is

exactly what Tony is going through. >So we’re going to call them on it — I’m

going to set up an appointment for him >with the psychiatrist that treats our son for

ADHD to get his honest opinion. >(I figure after working with him for 5+

years, he should know my husband well >enough to tell if it’s in his head or not!) >We’re also going to check out our local

Muscular Dystrophy clinic in a couple >of weeks – they said they might be able to

narrow things down, specifically as >to whether we’re dealing with either MS or Myasthenia. >No stone will be left unturned!  Boulders,

maybe, but stones definitely!  :) >Blessings, >Carolynn >"I can do all things through Christ who

strengthens me"  Phil. 4:13

Response:

In article <19990512101028.10380.00001…@ng23.aol.com>, syl…@aol.com (SYLV77) writes: >Over a hundred years ago, MS was called the "faker’s >disease" because doctors couldn’t figure out what was going on.

Hey my ex-step mother called it "faker who liked to lay up in the bed" !! Kathi

Response:

In article <19990512103006.10380.00001…@ng23.aol.com>, syl…@aol.com (SYLV77) writes: >You and others make me feel "lucky."  I went from waking up with my side >"asleep" on a Sunday, waiting for it to go away for a week, seeing a neuro on >the following Monday, going into the hospital for tests that Wednesday, and >that Friday. . .hey, guess what?  You have MS!

I had symptoms for a good 15 yrs before diagnosis and then it only showed up by ACCIDENT when I had a CAT scan of my sinuses, then MRIs to confirm that it was MS…… Kathi

Response:

Hi Terry, First thank you for your concern. With my health situation here in Montreal. It was well appreciated. <smiling at you> And yes. You can have numbness and tingling on the same side of the body. It just depends where your weakness is. For me I have numbness mostly all over. And the tingling in both arms and hands. But mostly the right arm and hand. As for the headaches. I get them quite often too. It’s hard for me to distinguish between them. It could be from stress. From the MS. From my vision loss. Or a combination of all three. The best advice I can give you. About the headaches. And numbness and tingling. Is to watch it. And see if it progresses. If it does maybe a visit to your neuro is warranted. And thank you again Terry. For your concern in regards to my situation. <smiling at you> Take care, Dawn

Response:

In article <19990512103006.10380.00001…@ng23.aol.com>,   syl…@aol.com (SYLV77) wrote: – Hide quoted text — Show quoted text -> Hi Deb! > << excited?  more like relieved that i wasn’t crazy nor > was it brain cancer.  then the reality set in. >> > You and others make me feel "lucky."  I went from waking up with my side > "asleep" on a Sunday, waiting for it to go away for a week, seeing a neuro on > the following Monday, going into the hospital for tests that Wednesday, and > that Friday. . .hey, guess what?  You have MS! > I had feared a stroke because they "run" in my family, but the numbness crossed > over from the left side of my body to the right side of my face.  I couldn’t > figure that one out! > I feel "lucky" because I didn’t have to wait so long to find out what was wrong > with me.  Not that I like it!  I don’t remember any "relief," just a numb mind > to match my numb body. > Sorry to hear you’re feeling down.  Depression doesn’t help anything, that’s > for sure.  I don’t know about your liver enzymes test results; they never tell > me what I "scored," just that I’m doing okay.  I think that if you were having > problems, they’d let you know so they could adjust your medications, so that > was good news. > Take care! > Sylvia

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