my Defective Brain

[Foxglove2660]

Some of you know this stuff... my history & what was new at Celtic Fling... but I just would like some of your thoughts on my new challenges with my defective brain...

I'm used to the brain tumor... it doesn't freak me out anymore... I get an mri every once in a while... to monitor it... last year there were two 'white spots' or lesions (depends on who you talk to) & I was told they were probably nothing...

long story short... I had another mri this year (because I lost half the field of view in my left eye... it did come back eventually... don't worry about that) and the number of lesions tripled from last year & there was no evidence of damage to the optic nerve.... the tumor was unchanged. (wow... I am omitting a lot from this... but it's already gonna be a freakin' long post.... )

'nother neurologist (I've seen 5 in 4 years.... really long story... ) ordered tests...
she gave me my diagnosis over the phone & I don't get a follow up until NOVEMBER!!!
what diagnosis you may be wondering.... multiple sclerosis.

It seems like a bad joke to have TWO things wrong with my head.

Input, please ladies... ? Should I wait until november or should I find neurologist number 6? [/b]

[Kismet]

Your health is precious...go find another doctor. Waiting till November doesn't sound like a good idea to me.

[Nevada]

have you contacted the MS society also for a recommendation for another opinion?

[Absinthe d'Accalia]

Yeah, I agree - waiting until November seems like a looong time from now. I can't imagine that it would be a bad thing to go get a second opinon. And kudos (sarcasm) to the doctor for relaying the diagnosis OVER THE PHONE! Geez, where'd she get her bedside manner? :roll:

[Ysobelle]

Please let me call Ken's doctor for you, or give you the number, or something! You know I worry about you.

[Foxglove2660]

Yeah... it was REAL fun over the phone :hmm: ... my input/output ability shut off for a while after what she was saying sunk in :stunned: ... I was taking notes of what she was saying... and then I started reading what I was writing & my brain just stopped working. I missed half of what she said. I had to leave work for a while and find my red head :hearts: ... *sigh* I'm so glad he had off work that day... heh, and that he wears absorbant cotton tee shirts...

Oh, the extent of the neurologist office's assistance, in the mean time (while I wait for NOVEMBER) to cope with this was to mail me a list of ms web sites.

Please note: Until moving in here, I had no home phone, no internet access and no TV. I's happily living in a low tech world... (and not late for work nearly a much as since I started posting day & night :meow: ) Web sites didn't do me any good whatsoever... :cuss:

Oh, and I called my primay care phyician... None of the specialist have been keeping them updated with my care. The last thing they knew was when I called for them to refer me to the Ophthamologist. They weren't told about the mri, the lesion increase, the neurologist, the spinal tap, the other spinal tap... or my new diagonsis. When i called to get them to try and get me an appointment at Hershey (recommended on at least one of the ms websites) the office staff chickie asked if any testing had been done to determine this diagnosis & said I had to get the neurologist's records sent to them before they would help me.

I think I'll have to go to my doctor's office and make the staff cry. :unamused:

Go ahead & give me the doctor's number.... I'll call all of them & the one with the earliest opening gets.... a brand NEW patient!!! yaaaaaay!

[Ysobelle]

Let me know what he says, okay? And if you'd like me to go with you-- and I can get off work, which I should be able to!-- I will.

[Foxglove2660]

I'z on hold too long when I tried to call today. :? But I did check & make sure he's in my network... yay, $15.00 copay instead of $300 deductible. I'll try again on monday.

I'm somewhat disenchanted with the whole thing. I almost want to just give up and wait it out. Or wait until "serious" symptoms develop... that's what I was told. No need to see me sooner because my symptoms where not "serious"... yet... :sigh:

[Ysobelle]

You'll have to pardon my language, but fuck that shit. You don't WANT serious symptoms! That's the whole point!

Ken agreed that November is unacceptable, and he seriously doubts they'll make you wait long. He had nothing but great things to say about Dr. Leist. I'm thinking VERY happy thoughts for you, baby.

[Ysobelle]

You'll have to pardon my language, but fuck that shit. You don't WANT serious symptoms! That's the whole point!

Ken agreed that November is unacceptable, and he seriously doubts they'll make you wait long. He had nothing but great things to say about Dr. Leist. I'm thinking VERY happy thoughts for you, baby.

[Foxglove2660]

I know. Goodness, how I know.
You know a good bit of what I've been through...
I'm just so tired of dealing with this kind of... stuff, thing, life.

okay... I'm being negative... ***Sigh*** I just want/need a hug from a certain red head to cheer me up... and I'll have to wait until after band practice on Sunday to get one...

[Foxglove2660]

I know. Goodness, how I know.
You know a good bit of what I've been through...
I'm just so tired of dealing with this kind of... stuff, thing, life.

okay... I'm being negative... ***Sigh*** I just want/need a hug from a certain red head to cheer me up... and I'll have to wait until after band practice on Sunday to get one...

[cyd]

I'z on hold too long when I tried to call today. :? But I did check & make sure he's in my network... yay, $15.00 copay instead of $300 deductible. I'll try again on monday.

I'm somewhat disenchanted with the whole thing. I almost want to just give up and wait it out. Or wait until "serious" symptoms develop... that's what I was told. No need to see me sooner because my symptoms where not "serious"... yet... :sigh:

Might i just say... BULLSHIT!!!

Sorry, Foxglove, but as someone with MS, I suggest you get yourself that new neuro, and you do it NOW.

In the last several years they've come up with at least four treatments that stall the progression of MS if caught early enough. If this doc doesn't do you well, might I suggest going to http://www.clams.org (Computer Literate Advocates with MS), and look at the "gooddocs lists" at the bottom of the page... they have a list of neuros and GPs in almost every area of the US that come recommended by people with MS.

If you want good resources or have any specific questions to ask me about MS, just drop me a line. Admittedly the lesions sound like they could be MS, but they could also be a few other things. Also, any neuro worth his salt would know that if you DO have MS, then you should be on disease modifying medications as soon as possible... Most of the meds will slow the progression, but they cannot reverse damage once it has occurred.

if you want to talk about this, please, don't hesitate to ask. I'm going to be somewhat busy over the next week with the <a href=http://www.MSFantasyBall.com>MS Fantasy Ball</a> planning and final details, but I'm always happy to answer questions and point someone in the right direction!

Get yourself a new neuro. No good neuro will just let MS be "let go" and dismiss it as being minor, when early treatment can prevent it from getting bad at all.

Cyd

[cyd]

I'z on hold too long when I tried to call today. :? But I did check & make sure he's in my network... yay, $15.00 copay instead of $300 deductible. I'll try again on monday.

I'm somewhat disenchanted with the whole thing. I almost want to just give up and wait it out. Or wait until "serious" symptoms develop... that's what I was told. No need to see me sooner because my symptoms where not "serious"... yet... :sigh:

Might i just say... BULLSHIT!!!

Sorry, Foxglove, but as someone with MS, I suggest you get yourself that new neuro, and you do it NOW.

In the last several years they've come up with at least four treatments that stall the progression of MS if caught early enough. If this doc doesn't do you well, might I suggest going to http://www.clams.org (Computer Literate Advocates with MS), and look at the "gooddocs lists" at the bottom of the page... they have a list of neuros and GPs in almost every area of the US that come recommended by people with MS.

If you want good resources or have any specific questions to ask me about MS, just drop me a line. Admittedly the lesions sound like they could be MS, but they could also be a few other things. Also, any neuro worth his salt would know that if you DO have MS, then you should be on disease modifying medications as soon as possible... Most of the meds will slow the progression, but they cannot reverse damage once it has occurred.

if you want to talk about this, please, don't hesitate to ask. I'm going to be somewhat busy over the next week with the <a href=http://www.MSFantasyBall.com>MS Fantasy Ball</a> planning and final details, but I'm always happy to answer questions and point someone in the right direction!

Get yourself a new neuro. No good neuro will just let MS be "let go" and dismiss it as being minor, when early treatment can prevent it from getting bad at all.

Cyd

[AllieSutherland]

As someone who also has MS, my experience is somewhat the "horror story" of what can happen if you're not treated correctly/wait...

My first neuro (who I not-so-lovingly refer to as "McDrive Thru Neuro" -- she wanted a clean and dry 15 min. consult every 3 months without "issues" being discussed) began seeing me after I got the results of my first MRI. To back up a bit, my first MRI was given not for suspected MS, but a suspected brain tumor (I lost my sight in each eye for two months). At that time, the term "probable MS" was still used (now it is not supposed to be used by neuros because it can be a delaying factor in starting injection therapy). Even though I had this episode of blindness and episodes in the past of numbness/tingling, she hadn't seen them herself, so she would not give a definitive diagnosis. In 9/01, I started Betaseron only because I insisted and so did my sister (a general practioner physician). When I had symptoms worsen with balance, fatigue, numbness, spasticity, the whole nine yards... she wouldn't take me seriously. I was not given steroid therapy.

The last straw was 07/07/04, when I began having severe numbness and tingling in my right hand/arm. I could not use it. I called her that day. She said she would not diagnose it until she saw me, and the soonest she would fit me in was 7/22/04. I went on (in agony) until 7/15/04. It worsened and other symptoms came. I called her and insisted that I *at least* get a full MRI (brain, complete spine). When I was lying down for the MRI's, I couldn't lie still with the spasticity and swelling. The tech stopped the MRI and said it was pointless, because my spinal cord had swollen into the vertebrae/discs and was rubbing against them (I was in excruciating pain). My spine (my first spinal MRI ever) was like a starry night -- full of lesions.

I called her crying from the MRI clinic, saying that my pain was too much, and I couldn't take it anymore. She said she'd see me that day. I started steroids right away.

Surprise, surprise. I left her and went to my current neuro immediately. SHE IS THE BEST. She looked at my MRI's, records from childhood (I had severe immondeficiency problems... now chalked up to MS), spinal taps, everything, and said, "You've got this badly. You needed aggressive treatment much earlier than now. You're on the shots, but you should have had steroids or chemo more regularly and sooner."

I'm now diagnosed with secondary-progressive MS. I have had three major exacerbations this year, and my lesion growth is (seemingly) not really being affected by the Betaseron at this point. I'm still on it because I think, what if there are some not coming because of it? My neuro says that we may start Novantrone chemo in the very near future. I am transitioning into a wheelchair.

My point on all this is not to scare you or paint a bleak picture -- not at all, and I hope it doesn't. My point is this: on initial diagnosis, you make a decision of how you're going to live with this damned disease. It's scary as hell. One thing is certain: YOU CAN'T (AND SHOULDN'T) DO THIS ALONE. You NEED a SUPERB neuro on your side. You need the best of help in urology, PT, nutrition, and general practice. Anything less can bring a great deal of pain from wondering "what if?"

Sweetheart, above all, know you're NEVER alone in this. There are many of us in the Guild with MS. The NMSS is a lifeline. There are friends and family who will help you through. Do get the best help available. Weigh options with meds and treatment.

If you would like, PM me anytime, and I will give you my personal info. I'm always available to talk, but above all, I'm here to listen. I'd love to get to know you better.

Love,
Lori (Allie Sutherland)

[AllieSutherland]

As someone who also has MS, my experience is somewhat the "horror story" of what can happen if you're not treated correctly/wait...

My first neuro (who I not-so-lovingly refer to as "McDrive Thru Neuro" -- she wanted a clean and dry 15 min. consult every 3 months without "issues" being discussed) began seeing me after I got the results of my first MRI. To back up a bit, my first MRI was given not for suspected MS, but a suspected brain tumor (I lost my sight in each eye for two months). At that time, the term "probable MS" was still used (now it is not supposed to be used by neuros because it can be a delaying factor in starting injection therapy). Even though I had this episode of blindness and episodes in the past of numbness/tingling, she hadn't seen them herself, so she would not give a definitive diagnosis. In 9/01, I started Betaseron only because I insisted and so did my sister (a general practioner physician). When I had symptoms worsen with balance, fatigue, numbness, spasticity, the whole nine yards... she wouldn't take me seriously. I was not given steroid therapy.

The last straw was 07/07/04, when I began having severe numbness and tingling in my right hand/arm. I could not use it. I called her that day. She said she would not diagnose it until she saw me, and the soonest she would fit me in was 7/22/04. I went on (in agony) until 7/15/04. It worsened and other symptoms came. I called her and insisted that I *at least* get a full MRI (brain, complete spine). When I was lying down for the MRI's, I couldn't lie still with the spasticity and swelling. The tech stopped the MRI and said it was pointless, because my spinal cord had swollen into the vertebrae/discs and was rubbing against them (I was in excruciating pain). My spine (my first spinal MRI ever) was like a starry night -- full of lesions.

I called her crying from the MRI clinic, saying that my pain was too much, and I couldn't take it anymore. She said she'd see me that day. I started steroids right away.

Surprise, surprise. I left her and went to my current neuro immediately. SHE IS THE BEST. She looked at my MRI's, records from childhood (I had severe immondeficiency problems... now chalked up to MS), spinal taps, everything, and said, "You've got this badly. You needed aggressive treatment much earlier than now. You're on the shots, but you should have had steroids or chemo more regularly and sooner."

I'm now diagnosed with secondary-progressive MS. I have had three major exacerbations this year, and my lesion growth is (seemingly) not really being affected by the Betaseron at this point. I'm still on it because I think, what if there are some not coming because of it? My neuro says that we may start Novantrone chemo in the very near future. I am transitioning into a wheelchair.

My point on all this is not to scare you or paint a bleak picture -- not at all, and I hope it doesn't. My point is this: on initial diagnosis, you make a decision of how you're going to live with this damned disease. It's scary as hell. One thing is certain: YOU CAN'T (AND SHOULDN'T) DO THIS ALONE. You NEED a SUPERB neuro on your side. You need the best of help in urology, PT, nutrition, and general practice. Anything less can bring a great deal of pain from wondering "what if?"

Sweetheart, above all, know you're NEVER alone in this. There are many of us in the Guild with MS. The NMSS is a lifeline. There are friends and family who will help you through. Do get the best help available. Weigh options with meds and treatment.

If you would like, PM me anytime, and I will give you my personal info. I'm always available to talk, but above all, I'm here to listen. I'd love to get to know you better.

Love,
Lori (Allie Sutherland)

[Foxglove2660]

sometimes I cope fairly well with all this... sometimes it gets to me... I get a bit depressed...

I appriciate the support... and advise... and doc names & phone numbers...

:grouphug:

Thank you!

[Foxglove2660]

sometimes I cope fairly well with all this... sometimes it gets to me... I get a bit depressed...

I appriciate the support... and advise... and doc names & phone numbers...

:grouphug:

Thank you!

[Ysobelle]

Hey, all you fabulous women.

The number I gave Emily was to my brother-in-law's doctor here in Philly, Dr. Thomas Leist, at Jefferson Hospital. Ken (the B-i-L in question) had an episode a while back that affected his vision, and there were, I believe, a few other things that made him start to look for a good doctor. It doesn't seem to be "classic" MS, but Dr. Leist is a researcher and neurologist who specialises in the disease, and apparently has a stellar, world-class reputation. He also has a great bedside manner, Ken assures me-- encourages people to ask lots of questions, and answers them, too. He got Ken into a research program into an experimental and promising drug, and Ken's doing fantastically with it. Have any of you heard of him? (Dr. Leist, I mean, not my brother-in-law.)

The only problem, of course, is it's a two-hour hike from Harrisburg. But hey, Emily-- if you come out this way, I'll take you to More Than Just Ice Cream when you're done. How's that?

[Ysobelle]

Hey, all you fabulous women.

The number I gave Emily was to my brother-in-law's doctor here in Philly, Dr. Thomas Leist, at Jefferson Hospital. Ken (the B-i-L in question) had an episode a while back that affected his vision, and there were, I believe, a few other things that made him start to look for a good doctor. It doesn't seem to be "classic" MS, but Dr. Leist is a researcher and neurologist who specialises in the disease, and apparently has a stellar, world-class reputation. He also has a great bedside manner, Ken assures me-- encourages people to ask lots of questions, and answers them, too. He got Ken into a research program into an experimental and promising drug, and Ken's doing fantastically with it. Have any of you heard of him? (Dr. Leist, I mean, not my brother-in-law.)

The only problem, of course, is it's a two-hour hike from Harrisburg. But hey, Emily-- if you come out this way, I'll take you to More Than Just Ice Cream when you're done. How's that?

[Foxglove2660]

:rotfl: Mistress Ysobelle... are you trying to bribe me to the doctor with ice cream?? :rotfl:

getting off work will be a pain... I have almost no approved time off left because of the problems I've already had and the vacation I'm supposed to go on in august... I think I need the vacation...

:augh: :tantrum: :powpow: :vent: :cuss: :faint: :sigh:

I REALLY need a vacation...

I can miss up to two hours a week in make up time, anything more than that & I have to have approved time or it becomes lost time... and where I work will fire you for lost time accumulation..... I really don't think it would be a good idea to be fired right now... pre-existing condition clauses and things like that....

:hmm:

I have to go get ready for my pilates class now... :wink:

[Foxglove2660]

:rotfl: Mistress Ysobelle... are you trying to bribe me to the doctor with ice cream?? :rotfl:

getting off work will be a pain... I have almost no approved time off left because of the problems I've already had and the vacation I'm supposed to go on in august... I think I need the vacation...

:augh: :tantrum: :powpow: :vent: :cuss: :faint: :sigh:

I REALLY need a vacation...

I can miss up to two hours a week in make up time, anything more than that & I have to have approved time or it becomes lost time... and where I work will fire you for lost time accumulation..... I really don't think it would be a good idea to be fired right now... pre-existing condition clauses and things like that....

:hmm:

I have to go get ready for my pilates class now... :wink:

[AllieSutherland]

Ysobelle, he sounds like a FABOO guy. That's the type of person neuros SHOULD be (listening, answering questions, being proactive)...

Fox :waves: Hi hon! I got your PM, and I'll be sending you my info, but I just wanted to chime in and say that the employer *MUST* honor a doc's excuse for a necessaryappoitment, especially in this case.
Cyd, can you chime in? I am 99 44/100% positive that, if you were fired, it would fall under ADA or FMLA requirements. Cyd is the Wench for this question.

Tell you what. Later today, I will check into it on my end. I have seen NMSS links re: how to deal with workplace situations, especially if you choose (or don't choose) to reveal your condition and laws that protect you, as well as insurance laws.

*starts the mental telepathy ping-ometer to the illustriously knoweldgeable Cyd*

[AllieSutherland]

Ysobelle, he sounds like a FABOO guy. That's the type of person neuros SHOULD be (listening, answering questions, being proactive)...

Fox :waves: Hi hon! I got your PM, and I'll be sending you my info, but I just wanted to chime in and say that the employer *MUST* honor a doc's excuse for a necessaryappoitment, especially in this case.
Cyd, can you chime in? I am 99 44/100% positive that, if you were fired, it would fall under ADA or FMLA requirements. Cyd is the Wench for this question.

Tell you what. Later today, I will check into it on my end. I have seen NMSS links re: how to deal with workplace situations, especially if you choose (or don't choose) to reveal your condition and laws that protect you, as well as insurance laws.

*starts the mental telepathy ping-ometer to the illustriously knoweldgeable Cyd*

[Foxglove2660]

I've been looking into fmla... seems to me the first thing I need is a good doc... the doc ysobelle told me about sounds ideal... except for the two hour drive... even with the ice cream bribe... 8)

[Foxglove2660]

I've been looking into fmla... seems to me the first thing I need is a good doc... the doc ysobelle told me about sounds ideal... except for the two hour drive... even with the ice cream bribe... 8)

[Foxglove2660]

YAAAAAAAYYYYYYY!!
progress... the diagnosing neurologist finally faxed the records to my primary doc, who finally called Hershey (like I asked two & a half weeks ago) and Hershey called & I have an appointment for a second opinion on september 3...

*sigh* alas and alack, they will not treat, but a second opinion is something I was looking for... It's progress!

[Foxglove2660]

YAAAAAAAYYYYYYY!!
progress... the diagnosing neurologist finally faxed the records to my primary doc, who finally called Hershey (like I asked two & a half weeks ago) and Hershey called & I have an appointment for a second opinion on september 3...

*sigh* alas and alack, they will not treat, but a second opinion is something I was looking for... It's progress!

[Ysobelle]

Are you still gonna call Dr. Leist?

[Ysobelle]

Are you still gonna call Dr. Leist?

[Foxglove2660]

yeah... at the very least to see when he can see me... this doc cannot see me about treatment... just a second opinion...

[Foxglove2660]

yeah... at the very least to see when he can see me... this doc cannot see me about treatment... just a second opinion...

[Ysobelle]

Excellent! You'll tell me what he says, right? Hell, you'll tell all of us?

[Ysobelle]

Excellent! You'll tell me what he says, right? Hell, you'll tell all of us?

[Foxglove2660]

:cry: :stunned: :hmm: :augh: :pfft:

Why do good doctors always seem to have crappy staff?
I called early this morning & got through to dr Leist's staff... I gave my name & told her that I'd been diagnosised with ms. I told her that I had been referred by a patient of his & wanted to set up a new patient appointment... she said the earliest opening he had was late november... I said okay... she started to take my information... made me repeat everything several times... and then she asked me what insurance I had... I told her... she said he doesn't accept that insurance... :hmm: Ummm... BULLSHIT!!!! she checked with someone & came back on the line & said she's never heard of my insurance co (um... blue shield???) and that I'd have to call my insurance company... I told her I already did & it's a bluecard ppo policy & it uses premierblue shield network in pa & that he is in network with the insurance... Then she said I would need to have my physican's office call & verify my information & give a referral.

:rant: :rant: :rant:

I realize that I have to be my own advocate... this still REALLY sucks... I've been dealing with doctors for years... I've been dealing with headaches (read that stess headaches and migraines), the brain tumor, bad drug reactions... and all the other stuff I've been through...
:rant: :rant: :rant:
This is still some of the worst run around I've been put through... Why are neurologists so difficult to get appointments with, except of course the quack that gave me the drugs that made me manic and blind... november and january are the best they can do because my symptoms are 'serious'...

:rant: :rant: :rant:
THAT'S THE POINT... you start treatment as soon as possible to avoid further deterioration... to prevent 'serious' That's the point of "preventative medicine"... They can't even get me in to discuss my options!!
:rant: :rant: :rant:

[Foxglove2660]

:cry: :stunned: :hmm: :augh: :pfft:

Why do good doctors always seem to have crappy staff?
I called early this morning & got through to dr Leist's staff... I gave my name & told her that I'd been diagnosised with ms. I told her that I had been referred by a patient of his & wanted to set up a new patient appointment... she said the earliest opening he had was late november... I said okay... she started to take my information... made me repeat everything several times... and then she asked me what insurance I had... I told her... she said he doesn't accept that insurance... :hmm: Ummm... BULLSHIT!!!! she checked with someone & came back on the line & said she's never heard of my insurance co (um... blue shield???) and that I'd have to call my insurance company... I told her I already did & it's a bluecard ppo policy & it uses premierblue shield network in pa & that he is in network with the insurance... Then she said I would need to have my physican's office call & verify my information & give a referral.

:rant: :rant: :rant:

I realize that I have to be my own advocate... this still REALLY sucks... I've been dealing with doctors for years... I've been dealing with headaches (read that stess headaches and migraines), the brain tumor, bad drug reactions... and all the other stuff I've been through...
:rant: :rant: :rant:
This is still some of the worst run around I've been put through... Why are neurologists so difficult to get appointments with, except of course the quack that gave me the drugs that made me manic and blind... november and january are the best they can do because my symptoms are 'serious'...

:rant: :rant: :rant:
THAT'S THE POINT... you start treatment as soon as possible to avoid further deterioration... to prevent 'serious' That's the point of "preventative medicine"... They can't even get me in to discuss my options!!
:rant: :rant: :rant:

[Foxglove2660]

The office for the doctor that I have, or should I say had the september appointment with called me today & cancelled... the doctor has been activated for military duty...

:?

Then they called me back with a cancellation for monday... :?


uhmmm... woo hoo for me... bad for the doc??

[Foxglove2660]

The office for the doctor that I have, or should I say had the september appointment with called me today & cancelled... the doctor has been activated for military duty...

:?

Then they called me back with a cancellation for monday... :?


uhmmm... woo hoo for me... bad for the doc??

[Foxglove2660]

okay... mayhaps someone may want to know the latest chaper in my defective brain's saga... :powpow:

I just got home from the second opinion & Dr. Ross wants to see the reports from the evoked response tests & the spinal tap before he says one way or the other (logical & stuff) He said he'll call once he forms an educated opinion... :oooh:

All I had with me were the mri's from 2001, 2003 & 2004, but not the recent test results... Heh, they called me friday afternoon with a monday cancellation, so I was a bit unprepared.... :?

but he says the lesions on the mri are relatively small & that my neurological responses are sound :aok: (yay, I am symetrical & I can balance & feel it when you stick me with a pin/hit me with a hammer... of course it really sucks when those things are not true... :sigh: ) so the ms was caught early, which is good... but injections on a weekly, three times a week, every other day or daily basis... That really kinda sucks...

Dr. Ross is a nice neurologist... he actually gave me the impression he gives a shit... but he thinks I should see a neurologist that specializes in MS... which seems like good sense to me...
:|

Oh.. and he agrees with all the other neurologists... It is an angioma the size of a ping pong ball & I do have migraines... :flamed:

[Foxglove2660]

okay... mayhaps someone may want to know the latest chaper in my defective brain's saga... :powpow:

I just got home from the second opinion & Dr. Ross wants to see the reports from the evoked response tests & the spinal tap before he says one way or the other (logical & stuff) He said he'll call once he forms an educated opinion... :oooh:

All I had with me were the mri's from 2001, 2003 & 2004, but not the recent test results... Heh, they called me friday afternoon with a monday cancellation, so I was a bit unprepared.... :?

but he says the lesions on the mri are relatively small & that my neurological responses are sound :aok: (yay, I am symetrical & I can balance & feel it when you stick me with a pin/hit me with a hammer... of course it really sucks when those things are not true... :sigh: ) so the ms was caught early, which is good... but injections on a weekly, three times a week, every other day or daily basis... That really kinda sucks...

Dr. Ross is a nice neurologist... he actually gave me the impression he gives a shit... but he thinks I should see a neurologist that specializes in MS... which seems like good sense to me...
:|

Oh.. and he agrees with all the other neurologists... It is an angioma the size of a ping pong ball & I do have migraines... :flamed:

[justLori]

okay... mayhaps someone may want to know the latest chaper in my defective brain's saga... :powpow:

Yes! We are interested--converned, really--and want to know that you are finding doctors ok and that all is well with you.

The shots may suck, but not being able to walk, or knit, or lift a pan out of the oven, or continue working at a job you love suck rocks more. So do what you can to hold off the worst of it all.

We're here for you.

just Lori

[justLori]

okay... mayhaps someone may want to know the latest chaper in my defective brain's saga... :powpow:

Yes! We are interested--converned, really--and want to know that you are finding doctors ok and that all is well with you.

The shots may suck, but not being able to walk, or knit, or lift a pan out of the oven, or continue working at a job you love suck rocks more. So do what you can to hold off the worst of it all.

We're here for you.

just Lori

[Ysobelle]

Ken has to take shots once a week, and he has to self-administer them, but he also hasn't had any more incidents, and it's been a couple of years. It's a trade-off, I know.

Someone at work is going through this as well-- her husband was diagnosed last year. Their doctor is at Johns Hopkins in Baltimore, though. No ice cream.

[Ysobelle]

Ken has to take shots once a week, and he has to self-administer them, but he also hasn't had any more incidents, and it's been a couple of years. It's a trade-off, I know.

Someone at work is going through this as well-- her husband was diagnosed last year. Their doctor is at Johns Hopkins in Baltimore, though. No ice cream.

[justLori]

Someone at work is going through this as well-- her husband was diagnosed last year. Their doctor is at Johns Hopkins in Baltimore, though. No ice cream.

Aaah...but Maggie Moo's is just a quick jaunt down to Annapolis...take you no time at all. :wink:

just Lori

[justLori]

Someone at work is going through this as well-- her husband was diagnosed last year. Their doctor is at Johns Hopkins in Baltimore, though. No ice cream.

Aaah...but Maggie Moo's is just a quick jaunt down to Annapolis...take you no time at all. :wink:

just Lori

[Foxglove2660]

BBBrrrrrrrr.... The second opinion doc gave me REALLY good information about treatment options... The frequent shots are just under this skin with a short, slender needle... the once a week is muscular... with a big long thick needle...

*sigh* I REALLY hate needles... and that was even before the week with two lumbar punctures... 5 needles in my spine that week...

**sigh** I really hate needles... always have... :sorry:


I thank you all for the concern & care... I'm trying not to let this get to me... Trying...

[Foxglove2660]

BBBrrrrrrrr.... The second opinion doc gave me REALLY good information about treatment options... The frequent shots are just under this skin with a short, slender needle... the once a week is muscular... with a big long thick needle...

*sigh* I REALLY hate needles... and that was even before the week with two lumbar punctures... 5 needles in my spine that week...

**sigh** I really hate needles... always have... :sorry:


I thank you all for the concern & care... I'm trying not to let this get to me... Trying...

[justLori]

**sigh** I really hate needles... always have... :sorry:


As someone who also hates needles, I feel for you.

But somehow, I managed to give blood on a regular basis for almost two years...it can be done. You will find a way to handle it. Think of it as a change in lifestyle. You can do it.

just Lori

[justLori]

**sigh** I really hate needles... always have... :sorry:


As someone who also hates needles, I feel for you.

But somehow, I managed to give blood on a regular basis for almost two years...it can be done. You will find a way to handle it. Think of it as a change in lifestyle. You can do it.

just Lori

[Foxglove2660]

major kudos for donating :cheer:
I go into shock every time I've tried to give blood... :faint:

Everytime they inject the contrast material for the mri's they blow my veins...
bruises big as my palm in the bend of my elbow...

at least the injections for ms are not veinous... they're cutaneous & intramuscular...

I think I'm getting used to the idea... but then... I haven't started the injections as yet...
:stunned:

[cyd]

Ysobelle, he sounds like a FABOO guy. That's the type of person neuros SHOULD be (listening, answering questions, being proactive)...

Fox :waves: Hi hon! I got your PM, and I'll be sending you my info, but I just wanted to chime in and say that the employer *MUST* honor a doc's excuse for a necessaryappoitment, especially in this case.
Cyd, can you chime in? I am 99 44/100% positive that, if you were fired, it would fall under ADA or FMLA requirements. Cyd is the Wench for this question.

Tell you what. Later today, I will check into it on my end. I have seen NMSS links re: how to deal with workplace situations, especially if you choose (or don't choose) to reveal your condition and laws that protect you, as well as insurance laws.

*starts the mental telepathy ping-ometer to the illustriously knoweldgeable Cyd*

sorry i wasn' payiing atttentiion at the time hon... tthat whole MS Fantasy Ball thiing... ;)

Anyway, yes! they CANNOT fire you for documentted medical reasons, as long as your boss is made aware that you are going somewhere for medical reasons, and you can back it up witht doocumentation if asked.

Shoot. i need to re-discoover where some of my links were from my former computer. I forgot to take my bookmarks with me when i left the lastt company, or i'd give you my ADA links.

Cyd

[cyd]

okay... mayhaps someone may want to know the latest chaper in my defective brain's saga... :powpow:

I just got home from the second opinion & Dr. Ross wants to see the reports from the evoked response tests & the spinal tap before he says one way or the other (logical & stuff) He said he'll call once he forms an educated opinion... :oooh:

All I had with me were the mri's from 2001, 2003 & 2004, but not the recent test results... Heh, they called me friday afternoon with a monday cancellation, so I was a bit unprepared.... :?

but he says the lesions on the mri are relatively small & that my neurological responses are sound :aok: (yay, I am symetrical & I can balance & feel it when you stick me with a pin/hit me with a hammer... of course it really sucks when those things are not true... :sigh: ) so the ms was caught early, which is good... but injections on a weekly, three times a week, every other day or daily basis... That really kinda sucks...

Dr. Ross is a nice neurologist... he actually gave me the impression he gives a shit... but he thinks I should see a neurologist that specializes in MS... which seems like good sense to me...
:|

Oh.. and he agrees with all the other neurologists... It is an angioma the size of a ping pong ball & I do have migraines... :flamed:

Yes, the injecttions suck. I've been on both the avonex and the rebif, and if they put you on any of them, let me knoow... Allie and i can both tell you what you want to do in order to avoid side effects, and how to deal with them. And how to avoiod makinig the shot suck. :)

Send me email at lady_cyd at yahoo dot com... anything youo want to talk about, I'll listen and/or help if I can... and i can definittely show you where the best places are to go...

Cyd

[cyd]

major kudos for donating :cheer:
I go into shock every time I've tried to give blood... :faint:

Everytime they inject the contrast material for the mri's they blow my veins...
bruises big as my palm in the bend of my elbow...

at least the injections for ms are not veinous... they're cutaneous & intramuscular...

I think I'm getting used to the idea... but then... I haven't started the injections as yet...
:stunned:

No more blood donating for you... they won't let you.

But I wll say... the only reason I switched from thte IM to the sub-q was that long needle... But the IM was only once a week.

But the 3x a week is more effecatious. So for long term remission, you're better off with the subq shots anyway.

I've gotten used tto the subq... it's doable. it's' not fun, but it's doable.

Trust me, I hATE needles, and I'm dooing it. Bettter than the alternative.

Make a routinie out of it... For example, i always watch MASH when i'm getting shot. Makes it easier. You're training your brain to accept it durinig a certain time and under certain circumstances.

Send me email. we'll talk.

Cyd

[Foxglove2660]

:(
I really was hoping the second opinion doc would say the first opinion doc was on crack... but alas I received a letter today in which he concurred with the original diagnosis.

so... the first one calls me at work to tell me I have MS and the second sends me a letter...

maybe they just think I can take it...
:(

[AllieSutherland]

((((hugs hugs of love, comfort and understanding))))

It's not easy to take in, I know. It may not even "take" for a long, long time. I don't even think it's "taken" fully in my own brain sometimes.

I can offer my shoulder, and I can always offer my ear (if you'd like to talk on the phone), chat time, or e-mail for support, venting, a laugh... anything.

I know Cyd feels the same way. And there are others amongst us here that *know*.

PM me if you'd like my info. Please know that you're never alone in this... ever.

Love,
Allie

[Foxglove2660]

:( So I've had a headache for... um... I think this is day 13 in a row. Not a migraine, Thank goodness... but none the less a consistent headache of varying strength that is non responsive to over the counter (OTC) medications of any quantity or combination...

Yes, I have an appointment tomorrow with my family physician. Why did I let it go for so long? I'm so used to it that I barly noticed. And I have the rare bad reactions to everything they've tried so far... But I'm tired of my head hurting everyday.


Besides, I love you guys... you're an honest audience.

[Absinthe d'Accalia]

Foxglove - this doesn't work for all headaches, but have you tried the pressure point in the web of your thumb? Feel around for a knot in there and then use your thumb and forefinger of the other hand. It's probably gonna hurt like a mo-fo, but it might ease up the pain a little bit for you.

[Foxglove2660]

My thanks. I have tried that. :( It doth not work on me. Not painful & not to end pain.

[AllieSutherland]

I think migraines go hand-in-hand for a lot of people with MS. I have had migraines since I started my period at 11. :( The neuros put me on Neurontin first, which was used as a migraine-preventative and also as a big help for neurological pain (such as facial neuralgia... like feeling like needles are poking your cheeks and affecting your facial movements... that was a big one for me).

Then later down the road, they found that Topomax had good results. Orginally an anti-seizure drug, it has been found to help prevent migraines, neurologic problems, clinical depression (which has been proven to go hand-in-hand with MS in case you didn't know) AND the extra added benefit of curbing your appetite/helping to hasten your metabolism. I LOVE TOPOMAX. It's been a great help to me.

Perhaps you may want to ask the doc about these two drugs. Where are you right now with injections? How long have you been on them at full dose? How are the migraines timed in relation to the injections if you've started them? These are questions that may help the doctor evaluate the migraines too. It took 2-3 months for me to stop feeling like I was hit by a Mack truck after every Betaseron injection, and I still feel ill overnight until about noon the next day with fever/chills and headache. I don't like the fact that it takes 2000 mg of Tylenol to get me thorugh the night every other night. That's NOT good for the liver by any means. :(

Keep us posted.
XOXOX

[Foxglove2660]

I will not be seen to discuss my treatment options for MS (the injections) until late november. :augh:

I'm glad you had a good reaction to topomax.
That drug made me legally blind for a week. :shock: I was close enough to a stop sign to touch it & could not make out the letters. :sorry: I was also more than 100 miles away from home when it happened. :thumbsdo:

"mild visual disturbance" my @ss. :cuss:


My doc just prescribed me an anti depressant & another migraine drug. two weeks of head pain and dreaming about being bludgeoned in the head & bleeding at the eyes are what it's taken to make me willing to give drugs a chance again... :tantrum: I have had such a bad set of reactions to everything they've tried... nose bleeds... "mild :censored: visual disturbance"... my personal favorite = a month long episode of mania...

anyone heard of cymbalta before? and I haven't tried midrin yet...

I'd like to propose a toast to rare reactions... may I not have any more of them!!

:grouphug:

[KissMeKate]

Got to this thread a little late but I agree with all the posts so far.

One rant that has to get out: What the :mmph: :cuss: :mmph: do these doctors think they are accomplishing by giving such a diagnosis over the phone?!? This happened to my sister and her reply was what do I do now? The doctor's reply was "I don't know". :shock:

Get a doctor you love and trust! And do everything the doctor says! Stay active - pilates is great and so is tai chi - keep moving. Work with your doctor to find the meds that will work best for you (my sister calls this better living through chemistry :wink: as she gets depression, migraines, and generally icky side effects from some of the meds). Go to the NMSS and read everything you can. There are so many, many of us here (who either have MS or are supportive of friends and family) that are here to listen, be shoulders, and support. We'll be here whenever you need us! :grouphug:

[Absinthe d'Accalia]

Foxglove - I have Midrin in my migraine arsenal. I used to get at least 3-4 a month when I was having all of my 'girly' problems and my estrogen was all over the scale. That's settled down quite a bit, so they're much more rare. Midrin works great for me - it works muscularly to relax all the tense muscles in your body which just make migraines worse (without being an addictive substance), as well as vascularly to stabilize the blood vessels in your brain. Also, check with your doc to see if you can take a magnesium supplement. Natural Calm is a good one to try. It's a powder that you mix with water and drink. Many migraine sufferers (myself included) can stop the headaches with the intake of magnesium. I take it and calcium before bed every night & find it quite helpful.

You might want to check out this link on yogajournal.com to see if you can get some relief:

http://www.yogajournal.com/health/1217_1.cfm

and

http://www.yogajournal.com/health/121_1.cfm

There are links at the bottom to poses that can help.

Do you happen to be a redhead? If so, we tend to be that miniscule percentage that have rare reactions to stuff. I argued with my gynecologist in San Diego over the fact that the blood pressure meds she prescribed to counteract the HRT (disaster situation - this doc was a by the rules-there-can't-possibly-be-any-other-protocol type of doc) was making me feel really bad (as in allergic reaction). Her response: 'well, less than 2% have a reaction to these meds!' Well, ma'am, guess I'm one of those 2%! (happens that the bp meds are sulfa based & I'm allergic to sulfa compounds - duh!).

I'll send some healing energy your way - ease that pressure, relax those muscles, sleep well....

[Adriana Rose]

That is total BULLSHIT(pardon the french) but when there is something like that there should be immediate follow up!


But keep truckin' girl! :grouphug:

[Foxglove2660]

at least I didn't dream about being hit in the head last night... :)

sometimes it's fun to be 2% of the population... but not when it comes to meds...

I don't classify as a redhead... I need an avatar on here I guess.... :?

[Foxglove2660]

Well... I have good news and bad news... well... sort of... The 16 day headache has abated, and more good news is I've got a new appointment due to cancellation with the neurologist, from November 19 to October 28!

I see the ophthalmologist tomorrow.

I'm having "interesting" reactions to the two drugs that I started last week.

My eyes have finally begun to undialate...
fatigue and hyperactivity in turns.
and waking up with stabbing head pain every time the medications wear off...
*sigh*

all I have time to post at the moment...

[AllieSutherland]

If this is your first time with this opthamologist and/or the first time they're checking for optic neuritis, I would take a dose of Tylenol before you go. When they shine the :rant: light into my eyes to check the optic nerve damage, I get an instant migraine for days.

Make sure he looks for optic neuritis, and discuss the possibility of doing evoked potentials (you look at a moving checkerboard TV screen with head electrodes on) if there is any slight possibility of the optic neuritis yet. They may also have you look at flashing lights in a bowl-shaped apparatus and press a button every time you see one to see your eye/sight/nerve reaction time. Also be sure you have a list of everything you've taken medicinally for the past six months (even if you went off of any).

I'm sure you know all this... these are just things I wish someone had told me the first post-diagnosis eye check I went in for. Let us know how it goes (((hugs & love)))

[Foxglove2660]

Thanks Allie! I wish someone had told me before I had these things done too. This is my three month follow up visit...

I had lost half the field of view in my left eye, that was what prompted the latest mri.

I've had the field of view test... (result was half gone almost exactly in the left... right was almost normal in comparison.
I've had the evoked potential response test... stare at this checker board while we measure how long it takes your brain to register that we're doing something VERY annoying to your eyes with that checkerboard... my left eye is quite messed up & the right is not quite as bad, but still messed up...
oh, and I've had the test where they put the electrodes on your hands to see how long it takes your brain to register than we're shocking your hands... *twitch twitch* That one was "normal".

The ophthalmogist thought it was traumatic optic neuropathy when I saw him three months ago... until the mri came back with no damage to the optic nerve. There were however six lesions... last year there were two "white spots". I was told they were nothing by the neurologist I saw last year, Dr Brown. He was more focused on getting me to take biofeedback with a friend of his. Yes, Biofeedback did help. Not quite enough, but it did Help... Oh... and the tumor was unchanged, but it did make the ophthalmologist feel in over his head & he got me in with the first neurologist he could that I hadn't been to yet.

Dr Harvey is an awesome ophthmologist... he was who I 'saw' when the topomax effected my vision.

[Foxglove2660]

well... the field of view test came back clean... so the eye doc has agreed that it was not traumatic optic neuropathy... that is is likely optic neuritis... which points also at MS.

I'm more used to baffeling the medical community... now when I wish for dissent they all are agreeing on one diagnosis... :( *sigh*

my eyes have been dialated since I started the Cymbalta... and my stomache hurts. Thank goodness not with acompanying nausea, just pain... but it is making it more difficult to make myself eat.

I was going to the gym 6 days a week. Now I'm lucky to make it 2. I haven't been able to do Tai Chi or Yoga or pilates... but I've started to work with a personal trainer.
i've also been losing about a pound a day since starting these drugs... but I don't think it's a good thing...

I experienced one of the worst mirgraines I've suffered through in months last night. I could tolerate NO light NO sound... movement made it so much worse... and I was nauseated. Ususally I don't get nausea with my migraines.

I called the prescribing doctor yesterday. Staff took a message & said she'll call me back. she hasn't yet. I'll give it until noon.

I guess I really need to set up a live journal before i get yelled at for posting this stuff here...

See some of you this weekend... but no promises on how 'me' I'll be... :?


Love you all!

[Foxglove2660]

waiting for my doctor to call me back. I've had a migraine thursday, saturday and tuesday. :shock: That's odd even for me. :? It's got to be the medication.

I am so tired of my head hurting.

[Ysobelle]

I forgot to ask-- what did the opthamologist say?

[Foxglove2660]

I forgot to ask-- what did the opthamologist say? not optic neuropathy... seems was optic neuritis, which also indicates MS with put with everything else. *shrug* I'm not used to doctors agreeing about me.


Okay... for those who did not have to witness it, I ended faire with another light triggered migraine. My regrets to those who had to watch, my thanks to those that helped me (I needed it)... and I will always wish I could have come back on Sunday.


Maxalt is a much better drug than Midrin!
Love to all :grouphug:

[AllieSutherland]

It's not so grand when you get them to agree on something like MS... but on a positive note, at least they're not hmmm-hawing around about it either (like they did with me initially and with so many others). Overall, I wish you'd have gotten a "no," but we're here for you, hon... (((hugs and love)))

So does this mean you start injections soon?

Love, Lori

[Foxglove2660]

So does this mean you start injections soon?

I see neurologist number seven on thursday of this week & the injections should start soon after... unless #7 comes up with something unexpected... :) you can't blame me for hoping.

The red head has off work that day & is going with me! :D

Thanks so much for being interested! :grouphug:

[AllieSutherland]

My advice:

Play dumb and ask for a hot male nurse to give your injections for oh, say the first two years... ;) LOL!!!!

*drops her pants for a *poke* ;) :rotfl:

Keep us updated, hon...

Love, Lori

[Foxglove2660]

:lol: That'd be interesting... but I do believe the Redhead would object :wink: . hee hee... of course, if HE's gonna help me with my injections... :lol: :lol: :lol:

I like neurologist #7. She's a good doctor. Dr. Laza made herself familiar with my file BEFORE I got there & took the time to LOOK at the MRI's BEFORE coming into the room! That's supposed to be par for the course, but we all know that's usually not the case.
She was sympathetic and LISTENED TO ME, knowledgeable and seemed to care.

7 really is my lucky number!

She was however very nervouse about my maxalt prescription. Apparently, like most drugs for migraines, Maxalt works primarily on blood vessels & in a way that can effect the cavernous angioma the size of a pingpong ball in my head. So, yes it did help make the pain of the mirgraine bearable the way nothing else has yet, however I should not use it because my head could explode. lucky me.

more laters! must go walk dog... 8)

[Brihanon]

Hi Emily it's your auntie, sending much healing to ye :wink:

[AllieSutherland]

Foxglove, have you had your first "poke" yet? ;)

*passes the Tylenol and ice packs*

[Foxglove2660]

First shot of Avonex administered... side effects to follow... :?

[AllieSutherland]

I got your text last night; I hope you're feeling okay. Let us know... ((hugs!)) I would have called you, but I hit a vein last night myself (ugh) and have felt like poo all day.

Hopefully they're not sympathy pains for you! :)

Let's talk again soon! (((hugs!))

Love, Lori (Allie)

[Brihanon]

Hi foxglove, I was next to your mom when you text her, :shock: and this one sincerly hopes the effects were slight. sending you green thoughts and all that symbol stuff. the spouse and I enjoyed your parental units, they seemed glad to have some time for themselves. Your mom likes to keep in touch with you and was perky to know that the act of injection was endurable. remember, ur loved

bri

[Foxglove2660]

My thanks Favorite Aunt!

In the interest of reducing duplication of effort on my part... I've started a livejournal.
so... yeah. there it is.

http://www.livejournal.com/users/foxglove_8778/

Love to all.

[Evan]

I have tried antidepressant cymbalta (http://www.drugdelivery.ca/s33724-s-CYMBALTA.aspx)and I had some effects like headache and some difficulty in vision. Apart from that the drug worked fine for me. However I have heard that it may have other side effects as well and it differs from person to person.

[Foxglove2660]

it's the same with all medications. ~_^

How nice that you have not had to suffer the side effects that I have. ^_^