Re: New to group - running out of hope - Reply to Debbie

[Guest guest]

Debbie,

First off.. Welcome to the Group... So sorry you need us, but glad you

found us... All the MonSter-ites in the group are the greatest group of

folks you'd ever chance to meet.. We don't ever claim to be medical

experts.. but we do abound with personal knowledge concerning this

disease.. And if someone doesn't have an answer to your question..

someone will find the answer to your question.. or at least point you in

the right direction.

I was diagnosed in September 2000... oh wow.. didn't think about that

before.. it's my 10 year Dx anniversary, but my medical history showed

that I had been dealing with the MonSter for at least 10 years prior to

diagnosis... In the 10 years prior to diagnosis it was suggested that I

had impinged nerves in my neck, carpal tunnel, well I do have a

herniated disk somewhere around L5.... and that the numbness of my big

toe on my right foot was caused by damaging a nerve during a bone graft

surgery on my ankle.. (well it did start right after the surgery, but

not immediately)..

I even had an emergency room doctor run a pregnancy test (seriously) on

me when I went there because I had gone completely numb from my chin

down my left arm (that was this doctor's answer to everything..

pregnancy test!! LOL)...

Have you suggested to any of the doctors that you've seen that you

suspect it might be MS? I know.. they'll look at you like your crazy..

Mine did.. Then she asked me what made me think that I had MS.. So I

told her.. and listed symptoms.. she did a few of those push my arm,

pull my arm, follow my finger.. type tests... Ordered a Brain MRI with

Contrast (the contrast is really pretty important, they can't miss any

active lesions with contrast)

THIS is a great site to get started exploring the MonSter, and it's

symptoms, medications for different things, etc...

http://www.mult-sclerosis.org/

You might also want to start a journal of sorts. Write down the things

your experiencing, when you are experiencing them. It's hard to

remember once you are actually in a doctor's office everything you

reminded yourself that you wanted to tell the doctor.. if it's written

down, and you remember to take the book with you.. then you have all the

info at hand.

Unfortunately, getting a diagnosis, as , I believe it was, said..

can be a process of ruling everything else out.. and that can take a

long time. I'm sorry that you're in pain, and I will keep you in my

thoughts and prayers that you will be, at the very least, relieved of

the pain.

Have any of the doctor prescribed anything for the pain?

HUGS

|)onna

> Hello ~

>

> My name is Debbie, I'm 42, and have been living in chronic pain off and on for

nearly five years. I can't seem to get anywhere with a diagnosis, except to

keep being told what I " don't have " .

>

> When I search my symptoms on the web, MS comes up repeatedly but the last

thing I want to do is jump to conclusions. I had an MRI of the lumbar spine a

few days ago and was told there are no disc problems - which is supposed to be

good news.

>

> All I heard was that there's still no explanation, and still no hope for

getting out of pain. I'm at a point now where my hope is running out, and my

optimism is quickly fading. The next test on the horizon for me is

nerve-conduction studies b/c of the tingling / pins-and-needles/ in my toes and

feet. For years it was just the right foot/leg, and arm - now the left foot has

started. I could go through all my symptoms, but I don't even know which ones

may or may not be possible signs of MS; and I'd hate to waste everyone's time.

>

> I am lost - I am confused - and I am scared. Not scared of what may causing

all this anymore, but scared that I'll never know - that this will just be how

my life turns out.

>

> I joined this group in hopes that I could get some " real life " information -

not just what's on the web; and hopefully get a better idea if MS is a real

possibility.

>

> Thanks for your time,

>

> Debbie

>

>

>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Donna,

Thanks for yet another great message of encouragement - you have all been so

wonderful just by sharing my frustration and your own stories that I at least

feel a little less insane than I did a week ago.

I managed to get my appt scheduled for the nerve conduction studies; they will

be two weeks from tomorrow in Atlanta. I've already decided to try to keep some

kind of log - I think I'll list all the wierd symptoms I can think of down one

side, and the days of the week across the top - then maybe just check off which

symptoms I have on which days. What do y'all think? Based on what I'm learning

from this group - all kinds of symptoms are coming to mind - things that go back

over 20 years. How do I know which ones are relevant?

I've also thought about telling them straight out that I suspect MS as a

possibility and want their help finding out; but I'm worries they'll treat me

like a hypochondriac. I'm trying to find all my test results, imaging, reports,

etc. from the last few years - since the pain & numbness really got out of hand

- so I can at least walk in there armed with as much info as possible.

BTW - any idea how to tell if carpal tunnel is just carpal tunnel or if it's an

MS symptom? I've had docs tell my I did have it then I didn't. They can't seem

to agree.

Thanks again everyone - looking forward to learning more!

Debbie

> > Hello ~

> >

> > My name is Debbie, I'm 42, and have been living in chronic pain off and on

for nearly five years. I can't seem to get anywhere with a diagnosis, except to

keep being told what I " don't have " .

> >

> > When I search my symptoms on the web, MS comes up repeatedly but the last

thing I want to do is jump to conclusions. I had an MRI of the lumbar spine a

few days ago and was told there are no disc problems - which is supposed to be

good news.

> >

> > All I heard was that there's still no explanation, and still no hope for

getting out of pain. I'm at a point now where my hope is running out, and my

optimism is quickly fading. The next test on the horizon for me is

nerve-conduction studies b/c of the tingling / pins-and-needles/ in my toes and

feet. For years it was just the right foot/leg, and arm - now the left foot has

started. I could go through all my symptoms, but I don't even know which ones

may or may not be possible signs of MS; and I'd hate to waste everyone's time.

> >

> > I am lost - I am confused - and I am scared. Not scared of what may causing

all this anymore, but scared that I'll never know - that this will just be how

my life turns out.

> >

> > I joined this group in hopes that I could get some " real life " information -

not just what's on the web; and hopefully get a better idea if MS is a real

possibility.

> >

> > Thanks for your time,

> >

> > Debbie

> >

> >

> >

> >

> >

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

I have had carpal tunnel and had surgery years ago. I have been told it is not related to MS and I've been told it goes along with MS. I do know that most members of my family have had carpal tunnel but no one else in my family has MS. So who knows? I am glad we are helping you! It's a good idea to keep a journal of some sort I think. I will also caution you though that while some doctors will take that list/journal seriously, most will not. That's in my experience. I have heard of doctors who, when presented with such a journal, decided the person was a hypochondriac. It's hard to know what to do!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To:

MSersLife Sent: Wed, September 1, 2010 6:45:53 PMSubject: Re: New to group - running out of hope - Reply to Debbie

Donna,Thanks for yet another great message of encouragement - you have all been so wonderful just by sharing my frustration and your own stories that I at least feel a little less insane than I did a week ago. I managed to get my appt scheduled for the nerve conduction studies; they will be two weeks from tomorrow in Atlanta. I've already decided to try to keep some kind of log - I think I'll list all the wierd symptoms I can think of down one side, and the days of the week across the top - then maybe just check off which symptoms I have on which days. What do y'all think? Based on what I'm learning from this group - all kinds of symptoms are coming to mind - things that go back over 20 years. How do I know which ones are relevant? I've also thought about telling them straight out that I suspect MS as a possibility and want their help finding out; but I'm worries they'll treat me like a hypochondriac. I'm

trying to find all my test results, imaging, reports, etc. from the last few years - since the pain & numbness really got out of hand - so I can at least walk in there armed with as much info as possible. BTW - any idea how to tell if carpal tunnel is just carpal tunnel or if it's an MS symptom? I've had docs tell my I did have it then I didn't. They can't seem to agree. Thanks again everyone - looking forward to learning more!Debbie> > Hello ~> >> > My name is Debbie, I'm 42, and have been living in chronic pain off and on for nearly five years. I can't seem to get anywhere with a diagnosis, except to keep being told what I "don't have".> >> > When I search my symptoms on the web, MS comes up repeatedly but the last thing I want to do is jump to conclusions. I had an MRI of the lumbar spine a few days ago and was told there are no disc problems - which is supposed to be good news.> >> > All I heard was that there's still no explanation, and still no hope for getting out of pain. I'm at a point now where my hope is running out, and my optimism is quickly fading. The next test on the horizon for me is nerve-conduction

studies b/c of the tingling / pins-and-needles/ in my toes and feet. For years it was just the right foot/leg, and arm - now the left foot has started. I could go through all my symptoms, but I don't even know which ones may or may not be possible signs of MS; and I'd hate to waste everyone's time.> >> > I am lost - I am confused - and I am scared. Not scared of what may causing all this anymore, but scared that I'll never know - that this will just be how my life turns out.> >> > I joined this group in hopes that I could get some "real life" information - not just what's on the web; and hopefully get a better idea if MS is a real possibility.> >> > Thanks for your time,> >> > Debbie> >> >> >> >> >> >> >> >> > ------------------------------------> >>

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