Re: New to group - running out of hope [Symptoms - sorry its so long!]

August 29, 2010

Thank you all so much for the warm welcome and support. I know you can all

understand the frustration - which in itself helps me feel a little less

isolated.

As far as my symptoms go, here's the " short " list:

Worst one right now is Left foot & leg (abt up to my knee) parasthesia; doesn't

matter if I'm sitting or walking although it's definitely worse after I've

walked for a long time. It has been ongoing for weeks - started in the outer two

toes then the whole foot, etc.

Right hip/buttock/back pain - was told it was trochanteric bursitis - but then

told it wasn't. X-rays are normal but muscles (piriformis) is always tighter

than a drum along with other low back muscles. Muscle relaxers used to help but

not so much anymore.

Pain when walking & after walking - both feet, and right leg gives me pure hell.

I've used the high-end orthotics which help a little, and it used to be that if

I wore my good running shoes, I could do a lot of walking w/out too much

problem. That is over. Even in my good shoes, I'm only good for about 45

minutes. Then, once I stop the pain gets really bad.

I have right shoulder pain (MRI & arthrogram were " normal " )

I had a c-spine MRI in 2007 & was told it was normal; just had the lumbar MRI -

normal.

I've had foot x-rays, knee x-rays, two courses of physical therapy w/only

moderate relief.

I've had headaches my entire adult life but they started getting really bad abt

age 22. Occasionally they are sinus related and decongestants usually help.

The bad ones start on one or both sides at the base of my skull/neck and feel

like they are wrapping around my head. Sometimes it hurts worse to lay down

because it's literally tender to the touch. Compared to my sister, I don't have

them that often, maybe once every six weeks or so; they run in our family

though.

I have serious problems with fatigue; like can't hold my head up sometimes

fatigue. I already take Adderall for ADHD and even with that I am ALWAYS tired.

I may have a few good hours in the morning - but that's usually about it. I

never thought of it being possibly related to my pain symptoms until I started

reading about MS.

I was told by one neurologist years ago that it " couldn't be MS " because my

extremities weren't going completely numb. Is that true?

Right now, it hurts to walk, it hurts to sit for too long, and it hurts to

drive. I haven't worn " pretty shoes " in years and am beginning to think I never

will.

My leg and feet symptoms used to be limited to the right side - but now the left

leg and foot are starting with the same pattern. There was a morning recently

where I put my feet on the floor and as soon as I stood up, it felt like pure

electricity running from the soles of my feet up through my legs. It eased up

when I sat back down, but didn't go away.

I take Meloxicam (mobic) every day for mild arthritis in the shoulder and for

generalized inflammation. I saw a Rhuematologist for an RA work up and was told

that no, it wasn't RA. But if I go off the anti-inflammatory med then my pain

goes through the roof and my mobility goes out the window. I could still move,

but it would hurt so much I don't think I would move very much.

I don't have degenerative disc disease, I don't have RA, I don't have a

herniated disc, I don't have a torn rotator cuff; but no one can tell me what I

might have. I have been holding back the tears since leaving the spine clinic

the other day after my MRI - and from I've read the process of confirming or

ruling out an MS dx is very lengthy on it's own.

I just don't know where to go from here. I used to run 2 - 3 miles a day; I

used to dance with my kids around the house; I used to walk across the floor in

the morning without feeling like I'd been hit by lightning. What is wrong with

me???

>

> 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

>

August 29, 2010

have they ruled out fibromyalgia?http://practical-homeschooling.orgwww.laurascoolstuff.com

Thank you all so much for the warm welcome and support. I know you can all understand the frustration - which in itself helps me feel a little less isolated.

As far as my symptoms go, here's the " short " list:

Worst one right now is Left foot & leg (abt up to my knee) parasthesia; doesn't matter if I'm sitting or walking although it's definitely worse after I've walked for a long time. It has been ongoing for weeks - started in the outer two toes then the whole foot, etc.

Right hip/buttock/back pain - was told it was trochanteric bursitis - but then told it wasn't. X-rays are normal but muscles (piriformis) is always tighter than a drum along with other low back muscles. Muscle relaxers used to help but not so much anymore.

Pain when walking & after walking - both feet, and right leg gives me pure hell. I've used the high-end orthotics which help a little, and it used to be that if I wore my good running shoes, I could do a lot of walking w/out too much problem. That is over. Even in my good shoes, I'm only good for about 45 minutes. Then, once I stop the pain gets really bad.

I have right shoulder pain (MRI & arthrogram were " normal " )

I had a c-spine MRI in 2007 & was told it was normal; just had the lumbar MRI - normal.

I've had foot x-rays, knee x-rays, two courses of physical therapy w/only moderate relief.

I've had headaches my entire adult life but they started getting really bad abt age 22. Occasionally they are sinus related and decongestants usually help. The bad ones start on one or both sides at the base of my skull/neck and feel like they are wrapping around my head. Sometimes it hurts worse to lay down because it's literally tender to the touch. Compared to my sister, I don't have them that often, maybe once every six weeks or so; they run in our family though.

I have serious problems with fatigue; like can't hold my head up sometimes fatigue. I already take Adderall for ADHD and even with that I am ALWAYS tired. I may have a few good hours in the morning - but that's usually about it. I never thought of it being possibly related to my pain symptoms until I started reading about MS.

I was told by one neurologist years ago that it " couldn't be MS " because my extremities weren't going completely numb. Is that true?

Right now, it hurts to walk, it hurts to sit for too long, and it hurts to drive. I haven't worn " pretty shoes " in years and am beginning to think I never will.

My leg and feet symptoms used to be limited to the right side - but now the left leg and foot are starting with the same pattern. There was a morning recently where I put my feet on the floor and as soon as I stood up, it felt like pure electricity running from the soles of my feet up through my legs. It eased up when I sat back down, but didn't go away.

I take Meloxicam (mobic) every day for mild arthritis in the shoulder and for generalized inflammation. I saw a Rhuematologist for an RA work up and was told that no, it wasn't RA. But if I go off the anti-inflammatory med then my pain goes through the roof and my mobility goes out the window. I could still move, but it would hurt so much I don't think I would move very much.

I don't have degenerative disc disease, I don't have RA, I don't have a herniated disc, I don't have a torn rotator cuff; but no one can tell me what I might have. I have been holding back the tears since leaving the spine clinic the other day after my MRI - and from I've read the process of confirming or ruling out an MS dx is very lengthy on it's own.

I just don't know where to go from here. I used to run 2 - 3 miles a day; I used to dance with my kids around the house; I used to walk across the floor in the morning without feeling like I'd been hit by lightning. What is wrong with me???

>

> 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

>

August 29, 2010

Yes, they've told me it doesn't fit the pattern - whatever that is. (According

to 2 docs)

> > >

> > > 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

> > >

> >

>

August 30, 2010

Debbie wrote: "I was told by one neurologist years ago that it "couldn't be MS" because myextremities weren't going completely numb. Is that true?"

That's a very strange thing to say! Numbness is not an on-or-off thing. If you're numb, you're numb even if your extremities aren't going "completely numb" (whatever that is...). I don't have MS, but my wife has. In the flare that brought her to the dx she was numb from the waist down, more so further down, with the feet being the most numb. But I don't think she was completely numb in even her feet (if that is unable to sense anything whatsoever), she did say it felt like she was wearing something thick and rubbery. And even if her feet would/could have been called completely numb in that flare, she has had episodes of being somewhat numb or

partially numb too. The bottom line is, if you are numb at all, without an obvious explanation (like "my foot went numb because I was sitting on it" or "I was outside in freezing weather, and soon my face was numb and had a rubber feeling to it"), then there is something going on with the nerves, one way or the other. Doesn't necessarily mean it's MS, but something is off. It's like the ER-orthopedist (who was the one admitting to hospital in that flare that brought her the dx) said: "The only real question is if I should admit you to the orthopedic clinic, on a suspicion of a possible dislocated disk, or if I should refer

you to the neurologists for further investigation along that route. What is absolutely clear is that legs shouldn't just go numb like that, and if they do, we need to look into it and fix it somehow"I am, Reb, by the way. Living in the south of Sweden, with my wife , who is the one with MS in the family. Welcome to the list! And Best of luck on your journey!love/Reb

August 30, 2010

Thanks for sharing that, Reb; it's so reassuring to have found people who

(unfortunately) have some " real life " knowledge with these kinds of symptoms.

I'm sorry to hear that your wife has gone through so much; I hope she's doing

alright.

You used the word " flare " - which others have also; I assume that means a

" flare-up " ? Does that refer to symptoms that just become really intolerable or

start suddenly?

Thanks,

Debbie

" I was told by one neurologist years ago that it " couldn't be

MS "

> because myextremities weren't going completely numb. Is that true? "

>

> That's a very strange thing to say! Numbness is not an on-or-off thing. If

> you're numb, you're numb even if your extremities aren't going " completely

numb "

> (whatever that is...). I don't have MS, but my wife has. In the flare

that

> brought her to the dx she was numb from the waist down, more so further down,

> with the feet being the most numb. But I don't think she was completely numb

in

> even her feet (if that is unable to sense anything whatsoever), she did say it

> felt like she was wearing something thick and rubbery. And even if her feet

> would/could have been called completely numb in that flare, she has had

episodes

> of being somewhat numb or partially numb too.

>

> The bottom line is, if you are numb at all, without an obvious explanation

(like

> " my foot went numb because I was sitting on it " or " I was outside in freezing

> weather, and soon my face was numb and had a rubber feeling to it " ), then

there

> is something going on with the nerves, one way or the other. Doesn't

necessarily

> mean it's MS, but something is off. It's like the ER-orthopedist (who was the

> one admitting to hospital in that flare that brought her the dx) said:

" The

> only real question is if I should admit you to the orthopedic clinic, on a

> suspicion of a possible dislocated disk, or if I should refer you to the

> neurologists for further investigation along that route. What is absolutely

> clear is that legs shouldn't just go numb like that, and if they do, we need

to

> look into it and fix it somehow "

>

> I am, Reb, by the way. Living in the south of Sweden, with my wife , who

is

> the one with MS in the family. Welcome to the list! And Best of luck on your

> journey!

>

> love

> /Reb

>

August 30, 2010

Dear DebbieI don't know where to start.... but one thing is for sure is WRONG is this part:I was told by one neurologist years ago that it "couldn't be MS" because my extremities weren't going completely numb. Is that true? WHAT??? lol... nope, not true. I have varying degrees of numbness myself. I was completely numb only one time. Most of the time it's "some" numbness. That neuro was wrong!I had a doctor tell me "it can't be MS. You're too old for MS." Well, I proved him wrong. lol I was only 46. So don't go on just what one doctor says:)Have you had a brain MRI yet? 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: Sun, August 29, 2010 6:13:16 PMSubject: Re: New to group - running out of hope [symptoms - sorry its so

long!]

Thank you all so much for the warm welcome and support. I know you can all understand the frustration - which in itself helps me feel a little less isolated. As far as my symptoms go, here's the "short" list:Worst one right now is Left foot & leg (abt up to my knee) parasthesia; doesn't matter if I'm sitting or walking although it's definitely worse after I've walked for a long time. It has been ongoing for weeks - started in the outer two toes then the whole foot, etc.Right hip/buttock/back pain - was told it was trochanteric bursitis - but then told it wasn't. X-rays are normal but muscles (piriformis) is always tighter than a drum along with other low back muscles. Muscle relaxers used to help but not so much anymore. Pain when walking & after walking - both feet, and right leg gives me pure hell. I've used the high-end orthotics which help a little, and it used to be that if I wore

my good running shoes, I could do a lot of walking w/out too much problem. That is over. Even in my good shoes, I'm only good for about 45 minutes. Then, once I stop the pain gets really bad. I have right shoulder pain (MRI & arthrogram were "normal")I had a c-spine MRI in 2007 & was told it was normal; just had the lumbar MRI - normal.I've had foot x-rays, knee x-rays, two courses of physical therapy w/only moderate relief. I've had headaches my entire adult life but they started getting really bad abt age 22. Occasionally they are sinus related and decongestants usually help. The bad ones start on one or both sides at the base of my skull/neck and feel like they are wrapping around my head. Sometimes it hurts worse to lay down because it's literally tender to the touch. Compared to my sister, I don't have them that often, maybe once every six weeks or so;

they run in our family though.I have serious problems with fatigue; like can't hold my head up sometimes fatigue. I already take Adderall for ADHD and even with that I am ALWAYS tired. I may have a few good hours in the morning - but that's usually about it. I never thought of it being possibly related to my pain symptoms until I started reading about MS.I was told by one neurologist years ago that it "couldn't be MS" because my extremities weren't going completely numb. Is that true? Right now, it hurts to walk, it hurts to sit for too long, and it hurts to drive. I haven't worn "pretty shoes" in years and am beginning to think I never will. My leg and feet symptoms used to be limited to the right side - but now the left leg and foot are starting with the same pattern. There was a morning recently where I put my feet on the floor and as soon as I stood up, it felt like pure

electricity running from the soles of my feet up through my legs. It eased up when I sat back down, but didn't go away.I take Meloxicam (mobic) every day for mild arthritis in the shoulder and for generalized inflammation. I saw a Rhuematologist for an RA work up and was told that no, it wasn't RA. But if I go off the anti-inflammatory med then my pain goes through the roof and my mobility goes out the window. I could still move, but it would hurt so much I don't think I would move very much. I don't have degenerative disc disease, I don't have RA, I don't have a herniated disc, I don't have a torn rotator cuff; but no one can tell me what I might have. I have been holding back the tears since leaving the spine clinic the other day after my MRI - and from I've read the process of confirming or ruling out an MS dx is very lengthy on it's own. I just don't know where to go from here.

I used to run 2 - 3 miles a day; I used to dance with my kids around the house; I used to walk across the floor in the morning without feeling like I'd been hit by lightning. What is wrong with me??? >> 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>------------------------------------

August 31, 2010

Hey Sharon, what a coinky-dinky--I too was 46 when I was diagnosed. Small worldain't it?love, Kate Re: New to group - running out of hope > [symptoms - sorry its > so long!]> > Thank you all so much for the warm welcome and support. I know > you can all > understand the frustration - which in itself helps me feel a > little less > isolated. > > > As far as my symptoms go, here's the "short" list:> > Worst one right now is Left foot & leg (abt up to my knee) > parasthesia; doesn't > matter if I'm sitting or walking although it's definitely worse > after I've > walked for a long time. It has been ongoing for weeks - started > in the outer two > toes then the whole foot, etc.> > Right hip/buttock/back pain - was told it was trochanteric > bursitis - but then > told it wasn't. X-rays are normal but muscles (piriformis) is > always tighter > than a drum along with other low back muscles. Muscle relaxers > used to help but > not so much anymore. > > > Pain when walking & after walking - both feet, and right leg > gives me pure > hell. I've used the high-end orthotics which help a little, and > it used to be > that if I wore my good running shoes, I could do a lot of > walking w/out too much > problem. That is over. Even in my good shoes, I'm only good > for about 45 > minutes. Then, once I stop the pain gets really bad. > > > I have right shoulder pain (MRI & arthrogram were "normal")> > I had a c-spine MRI in 2007 & was told it was normal; just had > the lumbar MRI - > normal.> > I've had foot x-rays, knee x-rays, two courses of physical > therapy w/only > moderate relief. > > > I've had headaches my entire adult life but they started getting > really bad abt > age 22. Occasionally they are sinus related and decongestants > usually help. > The bad ones start on one or both sides at the base of my > skull/neck and feel > like they are wrapping around my head. Sometimes it hurts worse > to lay down > because it's literally tender to the touch. Compared to my > sister, I don't have > them that often, maybe once every six weeks or so; they run in > our family > though.> > I have serious problems with fatigue; like can't hold my head up > sometimes > fatigue. I already take Adderall for ADHD and even with that I > am ALWAYS > tired. I may have a few good hours in the morning - but that's > usually about > it. I never thought of it being possibly related to my pain > symptoms until I > started reading about MS.> > I was told by one neurologist years ago that it "couldn't be MS" > because my > extremities weren't going completely numb. Is that true? > > > Right now, it hurts to walk, it hurts to sit for too long, and > it hurts to > drive. I haven't worn "pretty shoes" in years and am beginning > to think I never > will. > > > My leg and feet symptoms used to be limited to the right side - > but now the left > leg and foot are starting with the same pattern. There was a > morning recently > where I put my feet on the floor and as soon as I stood up, it > felt like pure > electricity running from the soles of my feet up through my > legs. It eased up > when I sat back down, but didn't go away.> > I take Meloxicam (mobic) every day for mild arthritis in the > shoulder and for > generalized inflammation. I saw a Rhuematologist for an RA work > up and was told > that no, it wasn't RA. But if I go off the anti-inflammatory > med then my pain > goes through the roof and my mobility goes out the window. I > could still move, > but it would hurt so much I don't think I would move very much. > > > I don't have degenerative disc disease, I don't have RA, I don't > have a > herniated disc, I don't have a torn rotator cuff; but no one can > tell me what I > might have. I have been holding back the tears since leaving > the spine clinic > the other day after my MRI - and from I've read the process of > confirming or > ruling out an MS dx is very lengthy on it's own. > > > I just don't know where to go from here. I used to run 2 - 3 > miles a day; I > used to dance with my kids around the house; I used to walk > across the floor in > the morning without feeling like I'd been hit by lightning. > What is wrong with > me??? > > > > > > > >> > 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> >> > > > > ------------------------------------> >

August 31, 2010

I had my first episode 2 weeks after my 17th birthday - I was not diagnosed until I was 55

so 6 years later here I am

To: MSersLife Sent: Tue, August 31, 2010 9:01:42 AMSubject: Re: Re: New to group - running out of hope [symptoms - sorry its so long!]

Hey Sharon, what a coinky-dinky--I too was 46 when I was diagnosed. Small worldain't it?love, Kate Re: New to group - running out of hope > [symptoms - sorry its > so long!]> > Thank you all so much for the warm welcome and support. I know > you can all > understand the frustration - which in itself

helps me feel a > little less > isolated. > > > As far as my symptoms go, here's the "short" list:> > Worst one right now is Left foot & leg (abt up to my knee) > parasthesia; doesn't > matter if I'm sitting or walking although it's definitely worse > after I've > walked for a long time. It has been ongoing for weeks - started > in the outer two > toes then the whole foot, etc.> > Right hip/buttock/back pain - was told it was trochanteric > bursitis - but then > told it wasn't. X-rays are normal but muscles (piriformis) is > always tighter > than a drum along with other low back muscles. Muscle relaxers > used to help but > not so much anymore. > > > Pain when walking & after walking - both feet, and right leg > gives me pure > hell. I've used the high-end orthotics

which help a little, and > it used to be > that if I wore my good running shoes, I could do a lot of > walking w/out too much > problem. That is over. Even in my good shoes, I'm only good > for about 45 > minutes. Then, once I stop the pain gets really bad. > > > I have right shoulder pain (MRI & arthrogram were "normal")> > I had a c-spine MRI in 2007 & was told it was normal; just had > the lumbar MRI - > normal.> > I've had foot x-rays, knee x-rays, two courses of physical > therapy w/only > moderate relief. > > > I've had headaches my entire adult life but they started getting > really bad abt > age 22. Occasionally they are sinus related and decongestants > usually help. > The bad ones start on one or both sides at the base of my > skull/neck and feel > like

they are wrapping around my head. Sometimes it hurts worse > to lay down > because it's literally tender to the touch. Compared to my > sister, I don't have > them that often, maybe once every six weeks or so; they run in > our family > though.> > I have serious problems with fatigue; like can't hold my head up > sometimes > fatigue. I already take Adderall for ADHD and even with that I > am ALWAYS > tired. I may have a few good hours in the morning - but that's > usually about > it. I never thought of it being possibly related to my pain > symptoms until I > started reading about MS.> > I was told by one neurologist years ago that it "couldn't be MS" > because my > extremities weren't going completely numb. Is that true? > > > Right now, it hurts to walk, it hurts to sit for too long, and

> it hurts to > drive. I haven't worn "pretty shoes" in years and am beginning > to think I never > will. > > > My leg and feet symptoms used to be limited to the right side - > but now the left > leg and foot are starting with the same pattern. There was a > morning recently > where I put my feet on the floor and as soon as I stood up, it > felt like pure > electricity running from the soles of my feet up through my > legs. It eased up > when I sat back down, but didn't go away.> > I take Meloxicam (mobic) every day for mild arthritis in the > shoulder and for > generalized inflammation. I saw a Rhuematologist for an RA work > up and was told > that no, it wasn't RA. But if I go off the anti-inflammatory > med then my pain > goes through the roof and my mobility goes out the window. I >

could still move, > but it would hurt so much I don't think I would move very much. > > > I don't have degenerative disc disease, I don't have RA, I don't > have a > herniated disc, I don't have a torn rotator cuff; but no one can > tell me what I > might have. I have been holding back the tears since leaving > the spine clinic > the other day after my MRI - and from I've read the process of > confirming or > ruling out an MS dx is very lengthy on it's own. > > > I just don't know where to go from here. I used to run 2 - 3 > miles a day; I > used to dance with my kids around the house; I used to walk > across the floor in > the morning without feeling like I'd been hit by lightning. > What is wrong with > me??? > > > > > > > >> > 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> >> > > > > ------------------------------------> >

August 31, 2010

I guess you weren't "too old" either! lol 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: Tue, August 31, 2010 7:01:42 AMSubject: Re: Re: New to group - running out of hope [symptoms - sorry its so long!]

Hey Sharon, what a coinky-dinky--I too was 46 when I was diagnosed. Small worldain't it?love, Kate Re: New to group - running out of hope > [symptoms - sorry its > so long!]> > Thank you all so much for the warm welcome and support. I know > you can all > understand the frustration - which

in itself helps me feel a > little less > isolated. > > > As far as my symptoms go, here's the "short" list:> > Worst one right now is Left foot & leg (abt up to my knee) > parasthesia; doesn't > matter if I'm sitting or walking although it's definitely worse > after I've > walked for a long time. It has been ongoing for weeks - started > in the outer two > toes then the whole foot, etc.> > Right hip/buttock/back pain - was told it was trochanteric > bursitis - but then > told it wasn't. X-rays are normal but muscles (piriformis) is > always tighter > than a drum along with other low back muscles. Muscle relaxers > used to help but > not so much anymore. > > > Pain when walking & after walking - both feet, and right leg > gives me pure > hell. I've used the

high-end orthotics which help a little, and > it used to be > that if I wore my good running shoes, I could do a lot of > walking w/out too much > problem. That is over. Even in my good shoes, I'm only good > for about 45 > minutes. Then, once I stop the pain gets really bad. > > > I have right shoulder pain (MRI & arthrogram were "normal")> > I had a c-spine MRI in 2007 & was told it was normal; just had > the lumbar MRI - > normal.> > I've had foot x-rays, knee x-rays, two courses of physical > therapy w/only > moderate relief. > > > I've had headaches my entire adult life but they started getting > really bad abt > age 22. Occasionally they are sinus related and decongestants > usually help. > The bad ones start on one or both sides at the base of my > skull/neck

and feel > like they are wrapping around my head. Sometimes it hurts worse > to lay down > because it's literally tender to the touch. Compared to my > sister, I don't have > them that often, maybe once every six weeks or so; they run in > our family > though.> > I have serious problems with fatigue; like can't hold my head up > sometimes > fatigue. I already take Adderall for ADHD and even with that I > am ALWAYS > tired. I may have a few good hours in the morning - but that's > usually about > it. I never thought of it being possibly related to my pain > symptoms until I > started reading about MS.> > I was told by one neurologist years ago that it "couldn't be MS" > because my > extremities weren't going completely numb. Is that true? > > > Right now, it hurts to walk, it hurts

to sit for too long, and > it hurts to > drive. I haven't worn "pretty shoes" in years and am beginning > to think I never > will. > > > My leg and feet symptoms used to be limited to the right side - > but now the left > leg and foot are starting with the same pattern. There was a > morning recently > where I put my feet on the floor and as soon as I stood up, it > felt like pure > electricity running from the soles of my feet up through my > legs. It eased up > when I sat back down, but didn't go away.> > I take Meloxicam (mobic) every day for mild arthritis in the > shoulder and for > generalized inflammation. I saw a Rhuematologist for an RA work > up and was told > that no, it wasn't RA. But if I go off the anti-inflammatory > med then my pain > goes through the roof and my mobility

goes out the window. I > could still move, > but it would hurt so much I don't think I would move very much. > > > I don't have degenerative disc disease, I don't have RA, I don't > have a > herniated disc, I don't have a torn rotator cuff; but no one can > tell me what I > might have. I have been holding back the tears since leaving > the spine clinic > the other day after my MRI - and from I've read the process of > confirming or > ruling out an MS dx is very lengthy on it's own. > > > I just don't know where to go from here. I used to run 2 - 3 > miles a day; I > used to dance with my kids around the house; I used to walk > across the floor in > the morning without feeling like I'd been hit by lightning. > What is wrong with > me??? > > > > > > > >> > 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> >> > > > > ------------------------------------> >

August 31, 2010

I had my first real episode when I was 18. And I wasn't diagnosed until I was 46. 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: Tue, August 31, 2010 7:05:27 AMSubject: Re: Re: New to group - running out of hope [symptoms - sorry its so long!]