Re: I'll just be whining... feel free to ignore!! :o)

[Guest guest]

i know how frustrating it is to feel misdiagnosed. keep pushing until you get the right answer, even if it isn't ms.

evelyncure cystic fibrosis

From: Mandy <mandysms@...>Subject: I'll just be whining... feel free to ignore!! ) , undiagnosed Date: Friday, June 13, 2008, 6:53 AM

Hiya everyone

Feel free to ignore this... I just need to let some frustration out to people who understand! Anyone want a chocolate cookie or several... this could get long!

I'm just soo frustrated with being ill and having, what I believe to be, the wrong diagnosis for it! My research into MS sounds a lot more like me than my current diagnosis!

The only reason I was diagnosed with Korsakov Syndrome is because I kept being sick but we found out, while I was in hospital, that I was allergic to dairy and I haven't been sick since avoiding it so that rules out the Korsakov Syndrome but I've got other things wrong with me that fit in with MS that aren't even mentioned with Korsakov Syndrome!

Another big thing that rules out Korsakov Syndrome (make that 2 things) is that I've never even been drunk let alone alcoholic and I take vitamins every night so that rules out the vitamin deficiency too!

The MS on the other hand takes all my symptoms into consideration as well as some things I've put up with for literally years but have never been diagnosed so I've just ignored! MS just fits me so much better y'know?

*sigh*

My GP has been really good up to now so why doesn't he refer me back to a Neurologist?

Sorry... thank you for reading this!

Stay Safe

Mandy

You may be only one person in the world, but you may also be the world to one person.

Money talks. Chocolate sings.

I wish I were a glow worm,A glow worm is never glum.For how can you be gloomyWhen the sun shines out your bum?

A bus station is where a bus stops.A train station is where train stops. On my desk, I have a work station.... What more can I say

*HUGS* TOTAL! give mandy_2uk more *HUGS*

~My Main Site~[Mandy's Depression] ~My Second Site~[Mandy's World]~My Twins Site~[Mandy's Twins]~Are you a Pagan?~[beginner Pagan]~Want to help me keep my sites free?~[Mach90] [MPM]~Want to hear from someone in Summerland?~[My psychic site]

Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!

[Guest guest]

Thank you ! I'm totally prepared to be wrong!

Stay Safe

Mandy

You may be only one person in the world, but you may also be the world to one person.

Money talks. Chocolate sings.

I wish I were a glow worm,A glow worm is never glum.For how can you be gloomyWhen the sun shines out your bum?

A bus station is where a bus stops.A train station is where train stops. On my desk, I have a work station.... What more can I say

*HUGS* TOTAL! give mandy_2uk more *HUGS*

~My Main Site~[Mandy's Depression] ~My Second Site~[Mandy's World]~My Twins Site~[Mandy's Twins]~Are you a Pagan?~[beginner Pagan]~Want to help me keep my sites free?~[Mach90] [MPM]~Want to hear from someone in Summerland?~[My psychic site]

Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!

From: evelyn

Sent: Friday, June 13, 2008 4:21 PM

Subject: Re: I'll just be whining... feel free to ignore!! )

i know how frustrating it is to feel misdiagnosed. keep pushing until you get the right answer, even if it isn't ms.

evelyncure cystic fibrosis

From: Mandy <mandysmsgooglemail>Subject: I'll just be whining... feel free to ignore!! ) , undiagnosed Date: Friday, June 13, 2008, 6:53 AM

Hiya everyone

Feel free to ignore this... I just need to let some frustration out to people who understand! Anyone want a chocolate cookie or several... this could get long!

I'm just soo frustrated with being ill and having, what I believe to be, the wrong diagnosis for it! My research into MS sounds a lot more like me than my current diagnosis!

The only reason I was diagnosed with Korsakov Syndrome is because I kept being sick but we found out, while I was in hospital, that I was allergic to dairy and I haven't been sick since avoiding it so that rules out the Korsakov Syndrome but I've got other things wrong with me that fit in with MS that aren't even mentioned with Korsakov Syndrome!

Another big thing that rules out Korsakov Syndrome (make that 2 things) is that I've never even been drunk let alone alcoholic and I take vitamins every night so that rules out the vitamin deficiency too!

The MS on the other hand takes all my symptoms into consideration as well as some things I've put up with for literally years but have never been diagnosed so I've just ignored! MS just fits me so much better y'know?

*sigh*

My GP has been really good up to now so why doesn't he refer me back to a Neurologist?

Sorry... thank you for reading this!

Stay Safe

Mandy

You may be only one person in the world, but you may also be the world to one person.

Money talks. Chocolate sings.

I wish I were a glow worm,A glow worm is never glum.For how can you be gloomyWhen the sun shines out your bum?

A bus station is where a bus stops.A train station is where train stops. On my desk, I have a work station.... What more can I say

*HUGS* TOTAL! give mandy_2uk more *HUGS*

~My Main Site~[Mandy's Depression] ~My Second Site~[Mandy's World]~My Twins Site~[Mandy's Twins]~Are you a Pagan?~[beginner Pagan]~Want to help me keep my sites free?~[Mach90] [MPM]~Want to hear from someone in Summerland?~[My psychic site]

Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!

[Guest guest]

Hi Mandy,

I cn und'stnd wht u mus b going through. Can u go to a neurologist on

your own w/o being reffered by gp? I don't know the med system u hv

in ur country. keep writing.

With good wishes,

Sunny

>

> Hiya everyone

>

> Feel free to ignore this... I just need to let some frustration out

to people who understand! Anyone want a chocolate cookie or

several... this could get long!

>

> I'm just soo frustrated with being ill and having, what I believe

to be, the wrong diagnosis for it! My research into MS sounds a lot

more like me than my current diagnosis!

>

> The only reason I was diagnosed with Korsakov Syndrome is because I

kept being sick but we found out, while I was in hospital, that I was

allergic to dairy and I haven't been sick since avoiding it so that

rules out the Korsakov Syndrome but I've got other things wrong with

me that fit in with MS that aren't even mentioned with Korsakov

Syndrome!

>

> Another big thing that rules out Korsakov Syndrome (make that 2

things) is that I've never even been drunk let alone alcoholic and I

take vitamins every night so that rules out the vitamin deficiency

too!

>

> The MS on the other hand takes all my symptoms into consideration

as well as some things I've put up with for literally years but have

never been diagnosed so I've just ignored! MS just fits me so much

better y'know?

>

> *sigh*

>

> My GP has been really good up to now so why doesn't he refer me

back to a Neurologist?

>

> Sorry... thank you for reading this!

>

> Stay Safe

>

> Mandy

>

> You may be only one person in the world,

> but you may also be the world to one person.

>

> Money talks. Chocolate sings.

>

> I wish I were a glow worm,

> A glow worm is never glum.

> For how can you be gloomy

> When the sun shines out your bum?

>

> A bus station is where a bus stops.

> A train station is where train stops.

> On my desk, I have a work station.... What more can I say

>

>

> *HUGS* TOTAL! give mandy_2uk more *HUGS*

>

> ~My Main Site~

> [Mandy's Depression]

> ~My Second Site~

> [Mandy's World]

> ~My Twins Site~

> [Mandy's Twins]

> ~Are you a Pagan?~

> [beginner Pagan]

> ~Want to help me keep my sites free?~

> [Mach90] [MPM]

> ~Want to hear from someone in Summerland?~

> [My psychic site]

>

> Live in the UK? Want to help someone to live after you've crossed

over? Sign up online for a donor card... I've carried one since I

was 11 years old!

>

[Guest guest]

Hiya Sunny

I wish I could but the only way to get *any* medical help here is either for your GP to refer you or you ending up in hospital!

Stay Safe

Mandy

You may be only one person in the world, but you may also be the world to one person.

Money talks. Chocolate sings.

I wish I were a glow worm,A glow worm is never glum.For how can you be gloomyWhen the sun shines out your bum?

A bus station is where a bus stops.A train station is where train stops. On my desk, I have a work station.... What more can I say

*HUGS* TOTAL! give mandy_2uk more *HUGS*

~My Main Site~[Mandy's Depression] ~My Second Site~[Mandy's World]~My Twins Site~[Mandy's Twins]~Are you a Pagan?~[beginner Pagan]~Want to help me keep my sites free?~[Mach90] [MPM]~Want to hear from someone in Summerland?~[My psychic site]

Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!

From: sunnyman_ch

Sent: Monday, June 16, 2008 5:19 AM

Subject: Re: I'll just be whining... feel free to ignore!! )

Hi Mandy,I cn und'stnd wht u mus b going through. Can u go to a neurologist on your own w/o being reffered by gp? I don't know the med system u hv in ur country. keep writing.With good wishes,Sunny>> Hiya everyone> > Feel free to ignore this... I just need to let some frustration out to people who understand! Anyone want a chocolate cookie or several... this could get long!> > I'm just soo frustrated with being ill and having, what I believe to be, the wrong diagnosis for it! My research into MS sounds a lot more like me than my current diagnosis! > > The only reason I was diagnosed with Korsakov Syndrome is because I kept being sick but we found out, while I was in hospital, that I was allergic to dairy and I haven't been sick since avoiding it so that rules out the Korsakov Syndrome but I've got other things wrong with me that fit in with MS that aren't even mentioned with Korsakov Syndrome!> > Another big thing that rules out Korsakov Syndrome (make that 2 things) is that I've never even been drunk let alone alcoholic and I take vitamins every night so that rules out the vitamin deficiency too!> > The MS on the other hand takes all my symptoms into consideration as well as some things I've put up with for literally years but have never been diagnosed so I've just ignored! MS just fits me so much better y'know?> > *sigh*> > My GP has been really good up to now so why doesn't he refer me back to a Neurologist?> > Sorry... thank you for reading this!> > Stay Safe > > Mandy > > You may be only one person in the world, > but you may also be the world to one person. > > Money talks. Chocolate sings. > > I wish I were a glow worm,> A glow worm is never glum.> For how can you be gloomy> When the sun shines out your bum?> > A bus station is where a bus stops.> A train station is where train stops. > On my desk, I have a work station.... What more can I say> > > *HUGS* TOTAL! give mandy_2uk more *HUGS*> > ~My Main Site~> [Mandy's Depression] > ~My Second Site~> [Mandy's World]> ~My Twins Site~> [Mandy's Twins]> ~Are you a Pagan?~> [beginner Pagan]> ~Want to help me keep my sites free?~> [Mach90] [MPM]> ~Want to hear from someone in Summerland?~> [My psychic site]> > Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!>

[Guest guest]

Hi -- I'm also in the US not the UK -- but...

I also have M.S. ( or am at least diagnosed as such)

M.S. is still a bit hard to diagnose

I agree that I would expect you to get to one more easily... but...

How about getting in touch with your M.S. Society???

I bet they might have some good ideas

or even some of the MS drug companies, in case they have clout

Just fyi, I was being treated for multiple 'allergies', as in my M.S. et al got worse from many foods, pollens, chemicals, hormones, et al...

My neurologist decided I had M.S. because of 'more than one episode', and more than one symptom -- still no proof re me, but i also share many symptoms thereof

AND how about 'treating yourself', as if you do have the Dx, though without the drugs for now...

and maybe add some of the holistic type suggestions until you get an MD to prescribe those drugs?

I know that here, many neurologists are starting with the MS drugs even before they feel sure, for the drugs apparently have such a good record. You might mention that also to your own doc?

good luck!! Jean

From: sunnyman_ch

Sent: Monday, June 16, 2008 12:19 AM

Subject: Re: I'll just be whining... feel free to ignore!! )

Hi Mandy,I cn und'stnd wht u mus b going through. Can u go to a neurologist on your own w/o being reffered by gp? I don't know the med system u hv in ur country. keep writing.With good wishes,Sunny>> Hiya everyone> > Feel free to ignore this... I just need to let some frustration out to people who understand! Anyone want a chocolate cookie or several... this could get long!> > I'm just soo frustrated with being ill and having, what I believe to be, the wrong diagnosis for it! My research into MS sounds a lot more like me than my current diagnosis! > > The only reason I was diagnosed with Korsakov Syndrome is because I kept being sick but we found out, while I was in hospital, that I was allergic to dairy and I haven't been sick since avoiding it so that rules out the Korsakov Syndrome but I've got other things wrong with me that fit in with MS that aren't even mentioned with Korsakov Syndrome!> > Another big thing that rules out Korsakov Syndrome (make that 2 things) is that I've never even been drunk let alone alcoholic and I take vitamins every night so that rules out the vitamin deficiency too!> > The MS on the other hand takes all my symptoms into consideration as well as some things I've put up with for literally years but have never been diagnosed so I've just ignored! MS just fits me so much better y'know?> > *sigh*> > My GP has been really good up to now so why doesn't he refer me back to a Neurologist?> > Sorry... thank you for reading this!> > Stay Safe > > Mandy > > You may be only one person in the world, > but you may also be the world to one person. > > Money talks. Chocolate sings. > > I wish I were a glow worm,> A glow worm is never glum.> For how can you be gloomy> When the sun shines out your bum?> > A bus station is where a bus stops.> A train station is where train stops. > On my desk, I have a work station.... What more can I say> > > *HUGS* TOTAL! give mandy_2uk more *HUGS*> > ~My Main Site~> [Mandy's Depression] > ~My Second Site~> [Mandy's World]> ~My Twins Site~> [Mandy's Twins]> ~Are you a Pagan?~> [beginner Pagan]> ~Want to help me keep my sites free?~> [Mach90] [MPM]> ~Want to hear from someone in Summerland?~> [My psychic site]> > Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!>

[Guest guest]

Thank you Jean! I'm going to keep on at my GP until he refers me to a Neurologist!

How do I find out about my local MS Society? Do I just do a google search for it or is there another way?

Stay Safe

Mandy

You may be only one person in the world, but you may also be the world to one person.

Money talks. Chocolate sings.

I wish I were a glow worm,A glow worm is never glum.For how can you be gloomyWhen the sun shines out your bum?

A bus station is where a bus stops.A train station is where train stops. On my desk, I have a work station.... What more can I say

*HUGS* TOTAL! give mandy_2uk more *HUGS*

~My Main Site~[Mandy's Depression] ~My Second Site~[Mandy's World]~My Twins Site~[Mandy's Twins]~Are you a Pagan?~[beginner Pagan]~Want to help me keep my sites free?~[Mach90] [MPM]~Want to hear from someone in Summerland?~[My psychic site]

Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!

From: gettingthere35

Sent: Monday, June 16, 2008 11:22 PM

Subject: Re: Re: I'll just be whining... feel free to ignore!! )

Hi -- I'm also in the US not the UK -- but...

I also have M.S. ( or am at least diagnosed as such)

M.S. is still a bit hard to diagnose

I agree that I would expect you to get to one more easily... but...

How about getting in touch with your M.S. Society???

I bet they might have some good ideas

or even some of the MS drug companies, in case they have clout

Just fyi, I was being treated for multiple 'allergies', as in my M.S. et al got worse from many foods, pollens, chemicals, hormones, et al...

My neurologist decided I had M.S. because of 'more than one episode', and more than one symptom -- still no proof re me, but i also share many symptoms thereof

AND how about 'treating yourself', as if you do have the Dx, though without the drugs for now...

and maybe add some of the holistic type suggestions until you get an MD to prescribe those drugs?

I know that here, many neurologists are starting with the MS drugs even before they feel sure, for the drugs apparently have such a good record. You might mention that also to your own doc?

good luck!! Jean

From: sunnyman_ch

Sent: Monday, June 16, 2008 12:19 AM

Subject: Re: I'll just be whining... feel free to ignore!! )

Hi Mandy,I cn und'stnd wht u mus b going through. Can u go to a neurologist on your own w/o being reffered by gp? I don't know the med system u hv in ur country. keep writing.With good wishes,Sunny>> Hiya everyone> > Feel free to ignore this... I just need to let some frustration out to people who understand! Anyone want a chocolate cookie or several... this could get long!> > I'm just soo frustrated with being ill and having, what I believe to be, the wrong diagnosis for it! My research into MS sounds a lot more like me than my current diagnosis! > > The only reason I was diagnosed with Korsakov Syndrome is because I kept being sick but we found out, while I was in hospital, that I was allergic to dairy and I haven't been sick since avoiding it so that rules out the Korsakov Syndrome but I've got other things wrong with me that fit in with MS that aren't even mentioned with Korsakov Syndrome!> > Another big thing that rules out Korsakov Syndrome (make that 2 things) is that I've never even been drunk let alone alcoholic and I take vitamins every night so that rules out the vitamin deficiency too!> > The MS on the other hand takes all my symptoms into consideration as well as some things I've put up with for literally years but have never been diagnosed so I've just ignored! MS just fits me so much better y'know?> > *sigh*> > My GP has been really good up to now so why doesn't he refer me back to a Neurologist?> > Sorry... thank you for reading this!> > Stay Safe > > Mandy > > You may be only one person in the world, > but you may also be the world to one person. > > Money talks. Chocolate sings. > > I wish I were a glow worm,> A glow worm is never glum.> For how can you be gloomy> When the sun shines out your bum?> > A bus station is where a bus stops.> A train station is where train stops. > On my desk, I have a work station.... What more can I say> > > *HUGS* TOTAL! give mandy_2uk more *HUGS*> > ~My Main Site~> [Mandy's Depression] > ~My Second Site~> [Mandy's World]> ~My Twins Site~> [Mandy's Twins]> ~Are you a Pagan?~> [beginner Pagan]> ~Want to help me keep my sites free?~> [Mach90] [MPM]> ~Want to hear from someone in Summerland?~> [My psychic site]> > Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!>

[Guest guest]

((Mandy))Feel free to vent as that's why we're all here. I too am sick and tired of being sick and tired. I suggest you speak to your doctor about your suspicions and ask him to refer you to a neurologist.

Several years ago my neurologist referred me to an ENT who insisted that I had the beginnings of MS. My neurologist went through the roof and said there was no way I had MS, however, now I kind of wonder if that ENT was correct.

Hang in there and don't let go. I know I'm very tempted lately to just let go and disappear.Hugs Love & Prayersette

[Guest guest]

Thank you ette! I *will* get to the bottom of this... my stubbornness will keep on until this is sorted! lol

Stay Safe

Mandy

You may be only one person in the world, but you may also be the world to one person.

Money talks. Chocolate sings.

I wish I were a glow worm,A glow worm is never glum.For how can you be gloomyWhen the sun shines out your bum?

A bus station is where a bus stops.A train station is where train stops. On my desk, I have a work station.... What more can I say

*HUGS* TOTAL! give mandy_2uk more *HUGS*

~My Main Site~[Mandy's Depression] ~My Second Site~[Mandy's World]~My Twins Site~[Mandy's Twins]~Are you a Pagan?~[beginner Pagan]~Want to help me keep my sites free?~[Mach90] [MPM]~Want to hear from someone in Summerland?~[My psychic site]

Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!

From: ette Limegrover

Sent: Thursday, June 19, 2008 3:50 AM

Subject: Re: I'll just be whining... feel free to ignore!! )

((Mandy))Feel free to vent as that's why we're all here. I too am sick and tired of being sick and tired. I suggest you speak to your doctor about your suspicions and ask him to refer you to a neurologist. Several years ago my neurologist referred me to an ENT who insisted that I had the beginnings of MS. My neurologist went through the roof and said there was no way I had MS, however, now I kind of wonder if that ENT was correct. Hang in there and don't let go. I know I'm very tempted lately to just let go and disappear.Hugs Love & Prayersette

[Guest guest]

Thank you Jean! I'm as stubborn as a very stubborny thing when I want to be! lol

Stay Safe

Mandy

You may be only one person in the world, but you may also be the world to one person.

Money talks. Chocolate sings.

I wish I were a glow worm,A glow worm is never glum.For how can you be gloomyWhen the sun shines out your bum?

A bus station is where a bus stops.A train station is where train stops. On my desk, I have a work station.... What more can I say

*HUGS* TOTAL! give mandy_2uk more *HUGS*

~My Main Site~[Mandy's Depression] ~My Second Site~[Mandy's World]~My Twins Site~[Mandy's Twins]~Are you a Pagan?~[beginner Pagan]~Want to help me keep my sites free?~[Mach90] [MPM]~Want to hear from someone in Summerland?~[My psychic site]

Live in the UK? Want to help someone to live after you've crossed over? Sign up online for a donor card... I've carried one since I was 11 years old!

From: gettingthere35

Sent: Thursday, June 19, 2008 4:41 AM

Subject: Re: I'll just be whining... feel free to ignore!! )

MS is so very hard to diagnose....

I agree that sometimes it is WE who finally get the docs to open their eyes....

I've been wanting to disappear over past weeks/months too -- using way too often my two NOT helpful combination letters ...

utc under the covers

b2b back to bed

and dwanna don't want to

then I have to hope that soon I get to say either "I'll do it ANYWAY" or use Flylady's thought that we can do anything for 15 minutes, hoping that will break the inactivity pattern

and if not, at least to decide to use the time for rest then, so as not to waste the time of inactivity by feeling guilty

Jean

Jean

From: ette Limegrover

Sent: Wednesday, June 18, 2008 10:50 PM

Subject: Re: I'll just be whining... feel free to ignore!! )

((Mandy))Feel free to vent as that's why we're all here. I too am sick and tired of being sick and tired. I suggest you speak to your doctor about your suspicions and ask him to refer you to a neurologist. Several years ago my neurologist referred me to an ENT who insisted that I had the beginnings of MS. My neurologist went through the roof and said there was no way I had MS, however, now I kind of wonder if that ENT was correct. Hang in there and don't let go. I know I'm very tempted lately to just let go and disappear.Hugs Love & Prayersette