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Elusive Multiple Sclerosis Diagnosis
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| LadyGodiva 2005-11-23, 12:59 am |
| I have not been diagnosised with MS. I have been tested for it. 2 different Neurologists. 2 different MRI's.
Both MRI readings were 'okay'. Nothing more, nothing less stated.
BUT... my body is still doing what it was doing when I first sent for that CAT Scan 2 years ago...
I need some advice.
2 Years ago I started getting 'split second' episodes of vertigo. They came & went. Twice while driving. I went to see my general family doc. He gave me some steroid allergy stuff for my nose, and sent me for a CAT scan. The CAT scan came back. Fronta
l Lobe Atrophy. My doc said "that is normally seen in one much older. A senior citizen. I am going to send you to a Neurologist". Enter Neuro #1. He sent me for an MRI. Came back 'okay'. BUT due to my eyes 'blanking' out now while exercising at the gym...
he wanted to send me for an 'optical evoked study'. I also advised him that yes, at times my right leg feels heavy, swollen almost inside. Stiff and hard to move when seated for any length of minutes. Muscles cramps nightly, sometimes while I am walking!
Not every day, not even every week. Sometimes everyday for a week, then nothing. You know...it comes it goes. Just when you decide you should go to the doc...it decides to go! You forget about it, until next time....
Also, told him I have had episodes, once or twice when it felt like someone threw hot water on my legs. My shins to be exact. Of course nothing was there. I included that I forget everyday words like iron, belt, coffee cup, etc...when I see the item. I ch
alk it up to my being 40 now. The older we are the more we forget right? I include too the fatigue, unbearable fatigue. Soreness, sometimes sharp pains in the head. Fleeting. But there none the less. I go on to tell him that when I have to go poop, I HAVE
to go poop. It's uncontrolable, no warning. BAM..it's there! I have to run. Not to mention my sensitivity to cold and heat! Lucky me!
BUT..still not diagnosis.
Same for neuro #2. Sent for MRI. Comes back and doc calls me and says "it's okay". Again no diagonsis.
I can live with that. I go on about my life. Symtoms still come and go. Same ones listed above. Had a rough 2 weeks when my legs hurt, sore and swollen feeling inside. Stiff and muscle crampy. I note it, but discount it at the same time. For a brief minut
e I wonder...? Then I go on.
Well, recently since the time change I have had to drive in the dark home. I work in the city and live in a rural area. A commuter! The highway I commute on is not lit up with traffic lights or road side lights. It's a dark highway at night. Well, this ye
ar on the first night of the change, I leave work, and once I climb onto to this highway..I have break out into a cold sweat. I can't see! I cannot see the area of darkness in front of me. I can't see where the road bends, ends, begins, etc....I am almost
paralyzed with fear. I do get home. I call my optometrist (i do wear glasses),and make an appointment right away. He sees me, says he will 'refine' my prescription (which is new. 2 months prev.), and lightly tint them. He measured my eyeball and said tha
t my pupils dialate abnormally large and I am probley bringing in too much light (on a dark highway????), I say okay. They take my glasses to fix, and I have to work out with my boss to leave work early for a week. Okay so now the kicker....I get my glass
es back. RELIEVED. I am banking on a smooth drive home AT NIGHT! WRONG. Just the same. NO difference. A bit sharper in the city. Less glare on oncoming car lights. BUT STILL THE SAME...I cannot see into the dark. The bend in the road, where it begins, whe
re it ends. I call again frantic. ANXIOUS. I am now referred to opthamologist for trouble with my retina. My current doc said I have depth perception trouble. ????
So, as you can see...I again wonder. Add it all up? Is it MS? They thought so before but the MRI's were okay...
I read about people having okay MRI's and still having MS. Another kicker....my biological mom had MS. We were not close, I think I saw her 1 time since I was 14 until she died 2 years ago. The only thing I know about her disease is that she had trbl walk
ing. So, I can't even ask her!!!...
My question...long in coming I know....
Should I continue to pursue my symtoms? Should I push the MS issue?
OR should I chalk it all up to growing old and hypocondria? HELP PLEASE! I need your advice....
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| dav1936531@nowhere.com 2005-11-23, 12:59 am |
| On 23 Nov 2005 03:49:53 GMT, LadyGodiva <LadyGodiva@echoforum.com>
wrote:
>Should I push the MS issue?
You shouldn't "push" the MS issue, but a family history of MS should
give your neuro something to consider. Continue to see the
neurologist. MRI's can sometimes be "clean" of lesions even when MS is
present. Have they done all the pre-screening blood tests? If so, and
they have all come back negative for other possibilities, see what the
neuro thinks is the next step. Possibly a lumbar puncture? MS is a
tricky deal do diagnose sometimes.
Dave
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LadyGodiva wrote:.
>
> My question...long in coming I know....
> Should I continue to pursue my symtoms? Should I push the MS issue?
> OR should I chalk it all up to growing old and hypocondria? HELP PLEASE! I need your advice....
Lady G., you're two years younger than i am, so please don't chalk it
up to growing 'old!' ;->
when they did the MRI, was it a brain MRI only, or full-on spinal MRI?
some people do carry the bulk of their lesions in the spinal cord,
rather than the brain. have you had a lumbar puncture (spinal tap)?
did the neuro know of your family history of M.S. when you saw him/her?
i don't think you should "push the M.S. issue," but possibly making up
a list with all your symptoms, and including the fact that your
biological mother had M.S., would be a good idea. it definitely sounds
like there are some neurological things going on, but it may or may not
be M.S. while not 'pushing' the doc toward any specific diagnosis, i do
think you should definitely continue to pursue the problem -- hey, it
might even turn out to be something cureable, and that would be great!
one thing, before you have a definite diagnosis of any kind, i'd advise
you to review your health, disability, and life insurance policies.
it's pretty near impossible to get insured with a pre-existing
condition -- so if you can, check out LTD ("Long-Term Disability")
insurance, and life insurance (don't let that scare you -- not because
your life is in immediate danger, just because you'll have a hellova
time being able to purchase it with a confirmed diagnosis of any
chronic medical condition) before getting the definite diagnosis.
all the best,
rose
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| I agree with the insurance, it's very important to have it in place. I
had exactly your symptoms and have had a hard course. My mri showed
only 2 tiny ubus (unknown bright objects) and spinal fluid was negative
for banding, All the random heaviness, tripping, odd visual 2 day
events. It's continued to full time wc, full time helpers, amazing
computers and this perky god blessed f-ing attitude, well, shit, Oprah,
I'm the luckiest person ever.
Really. Really!
Lo
PS; get that insurance.
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|
| Lo wrote:
> I agree with the insurance, it's very important to have it in place. I
> had exactly your symptoms and have had a hard course. My mri showed
> only 2 tiny ubus (unknown bright objects) and spinal fluid was negative
> for banding, All the random heaviness, tripping, odd visual 2 day
> events. It's continued to full time wc, full time helpers, amazing
> computers and this perky god blessed f-ing attitude, well, shit, Oprah,
> I'm the luckiest person ever.
> Really. Really!
> Lo
>
> PS; get that insurance.
>
Lo,
What kind of "odd visual 2 day events" do you get? I just went through
two days where whenever I moved my eyes too quickly, I would get
momentarily disoriented and would get a tingly, electrical feeling in my
arms, through my torso and into my legs. It was real bad the second
day, then I woke up on the third day and it was gone completely.
Just wondering if anyone else has had a similar experience or if it
really was "all in my head" as my GP implied. Note: I am currently
looking for another GP. My Neuro didn't think it was or rather he did
think it was in my head, but in another context, as he decided if it
worsened or did not improve shortly, we would try a couple days of
Solumedrol.
Alex
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| Ya know, I haven't been diagnosed with anything either and my plight has
been going on three and a half years.
That's when they first found the white lesions on my brain MRI. Several
months later, I was sent to the MS clinic in Nashville for an evoked
potential test. I don't know what the results of visual and auditory
parts were, but the sensory part was very abnormal. At that time, a
spinal tap found no bands (?).
Within a month or two, spinal stenosis and a herniated L4-5 became so
severe that the pain was almost unbearable and after three more months
of begging a doctor to believe me, I had surgery on my back. A lot of my
pain was relieved and I just assumed that the stenosis had caused that
abnormal evoked potential test and pushed it out of my mind.
Last October, I was online and a white curtain suddenly covered my
entire left field of vision. Pictures fractured into what looked like
huge pixels...floating around. It the days to follow, the words
eventually were collapsing like scaffolding that I would have to
mentally rebuild to read. At times, I felt like someone had smeared baby
oil on my glasses.
I had just finished reading a book called "The Diving Bell and the
Butterfly" for an online reading group. My first thought was that it was
a stroke because of that. I didn't even call the doctor. but just stayed
online and fought to get my vision back. (Now, my neurologist said this
was because the area of my brain affected controlled my reasoning.)
Two days later, I had an appointment with the neurosurgeon who'd done my
back surgery before, to schedule surgery again because my back is in
even worse shape now. I ask him about my visual problems and he did an
MRI and said I'd had a stroke.
In December, they did an angioplasty with stent placement in my carotid
artery and I had another stroke. This one affected my left side and
speech. Thankfully, it wasn't severe and a little inpatient PT helped
bring me almost back to "normal". When they did the MRI for the second
stroke, I saw the radiologist report and saw that there was a large
white lesion on my brain stem. I'm sure the neurosurgeon had to have
seen it and ignored it.
In the past year or so, I've had my legs and feet slowly become
increasingly numb and now probably have 50% of the feeling in my
feet...if even that. I've been having cramps in odd places for a couple
of years. I get electrical shocks in my arms, legs and especially one
spot on my head. My feet have hot flashes and I can't stand to have
anything touch them at those times. My toes sometimes feel like they're
swollen, as if they've been in extremely hot water, but they look very
thin. My feet hurt most of the time. I have peripheral neuropathy in all
four extremities and my EMG showed nerve damage throughout my body. I
fall or almost fall often. My bladder control is near gone. At times, my
bowels aren't much better. (This doesn't include my torn rotor cuff and
herniated disks and stenosis...etc. problems.)
My neurologist has another evoked potential scheduled next month and a
current MRI of mt brain just before my next appointment.
I had seven or eight doctors see the MRI with the brain stem lesion and
who knew some of my problems. They all ignored them. (One doctor, my
PCP, has said "you've got peripheral neuropathy.Look it up on the
internet." That was it.) I even forgot about it until this new
neurologist ask me to get *all* the MRI's and Xrays and reports that I
could get my hands on and ring them to my next appointment. He put them
all together and ordered the evoked potential and new MRI. I didn't have
to push for an MS diagnosis. I'm still not pushing for one. My goal is
to just find out what my problem is...no matter what it is.
(I had gone to this neurologist with a diagnosis of an elevated ana and
undifferentiated connective tissue disease. He keeps referring to it as
a lupus-like disease.)
If you're not happy with what your past doctors have said, get all the
MRI's, Xrays, radiologist's reports, and anything like that you might
know of, and make an appointment with another neurologist. Just tell him
that something is wrong and ask him if he can tell you what it is.
That's my two cents worth...for what it's worth. I know this wondering
and waiting is hell. I'm doing it, too. Good luck on whatever you decide
to do.
[Rereading your post, I too have the brain atrophy and vertigo, but that
has never been mentioned. When you say that your vision problems occur
mostly at night, I ask myself how your diet is. A vitamin A deficiency
has caused me to have terrible driving problems in the past, where my
vision was concerned.]
LadyGodiva@echoforum.com (LadyGodiva) wrote:
I have not been diagnosised with MS. I have been tested for it. 2
different Neurologists. 2 different MRI's. Both MRI readings were
'okay'. Nothing more, nothing less stated. BUT... my body is still doing
what it was doing when I first sent for that CAT Scan 2 years ago... I
need some advice.
2 Years ago I started getting 'split second' episodes of vertigo. They
came & went. Twice while driving. I went to see my general family
doc. He gave me some steroid allergy stuff for my nose, and sent me for
a CAT scan.
The CAT scan came back. Frontal Lobe Atrophy. My doc said "that is
normally seen in one much older. A senior citizen. I am going to send
you to a Neurologist". Enter Neuro #1. He sent me for an MRI. Came back
'okay'. BUT due to my eyes 'blanking' out now while exercising at the
gym...he wanted to send me for an 'optical evoked study'. I also advised
him that yes, at times my right leg feels heavy, swollen almost inside.
Stiff and hard to move when seated for any length of minutes. Muscles
cramps nightly, sometimes while I am walking! Not every day, not even
every week.
Sometimes everyday for a week, then nothing. You know...it comes it
goes. Just when you decide you should go to the doc...it decides to go!
You forget about it, until next time.... Also, told him I have had
episodes, once or twice when it felt like someone threw hot water on my
legs. My shins to be exact. Of course nothing was there. I included that
I forget everyday words like iron, belt, coffee cup, etc...when I see
the item. I chalk it up to my being 40 now. The older we are the more we
forget right? I include too the fatigue, unbearable fatigue. Soreness,
sometimes sharp pains in the head. Fleeting. But there none the less. I
go on to tell him that when I have to go poop, I HAVE to go poop. It's
uncontrolable, no warning. BAM..it's there! I have to run. Not to
mention my sensitivity to cold and heat! Lucky me! BUT..still not
diagnosis.
Same for neuro #2. Sent for MRI. Comes back and doc calls me and says
"it's okay". Again no diagonsis. I can live with that. I go on about my
life. Symtoms still come and go. Same ones listed above. Had a rough 2
weeks when my legs hurt, sore and swollen feeling inside. Stiff and
muscle crampy. I note it, but discount it at the same time. For a brief
minute I wonder...? Then I go on.
Well, recently since the time change I have had to drive in the dark
home. I work in the city and live in a rural area. A commuter! The
highway I commute on is not lit up with traffic lights or road side
lights. It's a dark highway at night. Well, this year on the first night
of the change, I leave work, and once I climb onto to this highway..I
have break out into a cold sweat. I can't see! I cannot see the area of
darkness in front of me. I can't see where the road bends, ends, begins,
etc....I am almost paralyzed with fear. I do get home. I call my
optometrist (i do wear glasses),and make an appointment right away. He
sees me, says he will 'refine' my prescription (which is new. 2 months
prev.), and lightly tint them. He measured my eyeball and said that my
pupils dialate abnormally large and I am probley bringing in too much
light (on a dark highway????), I say okay. They take my glasses to fix,
and I have to work out with my boss to leave work early for a week. Okay
so now the kicker....I get my glasses back.
RELIEVED. I am banking on a smooth drive home AT NIGHT! WRONG. Just the
same. NO difference. A bit sharper in the city. Less glare on oncoming
car lights. BUT STILL THE SAME...I cannot see into the dark. The bend in
the road, where it begins, where it ends. I call again frantic. ANXIOUS.
I am now referred to opthamologist for trouble with my retina. My
current doc said I have depth perception trouble. ????
So, as you can see...I again wonder. Add it all up? Is it MS? They
thought so before but the MRI's were okay... I read about people having
okay MRI's and still having MS. Another kicker....my biological mom had
MS. We were not close, I think I saw her 1 time since I was 14 until she
died 2 years ago. The only thing I know about her disease is that she
had trbl walking. So, I can't even ask her!!!...
My question...long in coming I know....
Should I continue to pursue my symtoms? Should I push the MS issue? OR
should I chalk it all up to growing old and hypocondria? HELP PLEASE! I
need your advice....
| |
| Rob Duncan 2005-11-25, 1:05 am |
|
"LadyGodiva" <LadyGodiva@echoforum.com> wrote in message
news:4383e6e0$0$7700$6cceaf45@news.echoforum.com...
>I have not been diagnosised with MS. I have been tested for it. 2 different
>Neurologists. 2 different MRI's.
> Both MRI readings were 'okay'. Nothing more, nothing less stated.
> BUT... my body is still doing what it was doing when I first sent for that
> CAT Scan 2 years ago...
> I need some advice.
>
> 2 Years ago I started getting 'split second' episodes of vertigo. They
> came & went. Twice while driving. I went to see my general family doc.
> He gave me some steroid allergy stuff for my nose, and sent me for a CAT
> scan. The CAT scan came back. Frontal Lobe Atrophy. My doc said "that is
> normally seen in one much older. A senior citizen. I am going to send you
> to a Neurologist". Enter Neuro #1. He sent me for an MRI. Came back
> 'okay'. BUT due to my eyes 'blanking' out now while exercising at the
> gym...he wanted to send me for an 'optical evoked study'. I also advised
> him that yes, at times my right leg feels heavy, swollen almost inside.
> Stiff and hard to move when seated for any length of minutes. Muscles
> cramps nightly, sometimes while I am walking! Not every day, not even
> every week. Sometimes everyday for a week, then nothing. You know...it
> comes it goes. Just when you decide you should go to the doc...it decides
> to go! You forget about it, until next time....
> Also, told him I have had episodes, once or twice when it felt like
> someone threw hot water on my legs. My shins to be exact. Of course
> nothing was there. I included that I forget everyday words like iron,
> belt, coffee cup, etc...when I see the item. I chalk it up to my being 40
> now. The older we are the more we forget right? I include too the fatigue,
> unbearable fatigue. Soreness, sometimes sharp pains in the head. Fleeting.
> But there none the less. I go on to tell him that when I have to go poop,
> I HAVE to go poop. It's uncontrolable, no warning. BAM..it's there! I have
> to run. Not to mention my sensitivity to cold and heat! Lucky me!
> BUT..still not diagnosis.
>
> Same for neuro #2. Sent for MRI. Comes back and doc calls me and says
> "it's okay". Again no diagonsis.
> I can live with that. I go on about my life. Symtoms still come and go.
> Same ones listed above. Had a rough 2 weeks when my legs hurt, sore and
> swollen feeling inside. Stiff and muscle crampy. I note it, but discount
> it at the same time. For a brief minute I wonder...? Then I go on.
>
> Well, recently since the time change I have had to drive in the dark home.
> I work in the city and live in a rural area. A commuter! The highway I
> commute on is not lit up with traffic lights or road side lights. It's a
> dark highway at night. Well, this year on the first night of the change, I
> leave work, and once I climb onto to this highway..I have break out into a
> cold sweat. I can't see! I cannot see the area of darkness in front of me.
> I can't see where the road bends, ends, begins, etc....I am almost
> paralyzed with fear. I do get home. I call my optometrist (i do wear
> glasses),and make an appointment right away. He sees me, says he will
> 'refine' my prescription (which is new. 2 months prev.), and lightly tint
> them. He measured my eyeball and said that my pupils dialate abnormally
> large and I am probley bringing in too much light (on a dark highway????),
> I say okay. They take my glasses to fix, and I have to work out with my
> boss to leave work early for a week. Okay so now the kicker....I get my
> glasses back. RELIEVED. I am banking on a smooth drive home AT NIGHT!
> WRONG. Just the same. NO difference. A bit sharper in the city. Less glare
> on oncoming car lights. BUT STILL THE SAME...I cannot see into the dark.
> The bend in the road, where it begins, where it ends. I call again
> frantic. ANXIOUS. I am now referred to opthamologist for trouble with my
> retina. My current doc said I have depth perception trouble. ????
>
> So, as you can see...I again wonder. Add it all up? Is it MS? They thought
> so before but the MRI's were okay...
> I read about people having okay MRI's and still having MS. Another
> kicker....my biological mom had MS. We were not close, I think I saw her 1
> time since I was 14 until she died 2 years ago. The only thing I know
> about her disease is that she had trbl walking. So, I can't even ask
> her!!!...
>
> My question...long in coming I know....
> Should I continue to pursue my symtoms? Should I push the MS issue?
> OR should I chalk it all up to growing old and hypocondria? HELP PLEASE! I
> need your advice....
What youve described doesnt sound like MS.
Rob
| |
| QQQte@webtv.net 2005-11-25, 12:54 pm |
| it doesnt sound like ms to me but i would pursue an answer. when
something is disrupting to your quailty of life then its a problem...
wether or not you are a hypochrondaic it is a true disorder... however
it doesnt sound like it.... you might have some anxiety that is
componding the dx... im not a doc at all these are just my thoughts.....
im not one to belive for a moment that mris are that useful in detecting
ms... best of luck... dory
........" There is so much good in the worst of us and so much bad in
the best of us that its rather hard to discern which of us ought to
reform the rest of us"...........
.........Alain Fournier.........
| |
| QQQte@webtv.net 2005-11-25, 12:54 pm |
| alex i dont think it was in your head at all.. your docs suck... good
luck and pay no mind to its all in your head... its a rather
unintelligent doc that would think that. docs practice medicine and they
learn more about being good docs from the patients they treat..... maybe
they are holding out for more episodes.... all ways remember that just
because you have ms doesnt mean you cant have someting else....
onece ina while i wonder how an mser could possibly figure out if they
were having a stroke..... good luck and i like reading your replys to
others..... dory with the broken key board.... and no spell check......
dory
........" There is so much good in the worst of us and so much bad in
the best of us that its rather hard to discern which of us ought to
reform the rest of us"...........
.........Alain Fournier.........
| |
|
| QQQte@webtv.net wrote:
> alex i dont think it was in your head at all.. your docs suck... good
> luck and pay no mind to its all in your head... its a rather
> unintelligent doc that would think that. docs practice medicine and they
> learn more about being good docs from the patients they treat..... maybe
> they are holding out for more episodes.... all ways remember that just
> because you have ms doesnt mean you cant have someting else....
>
> onece ina while i wonder how an mser could possibly figure out if they
> were having a stroke..... good luck and i like reading your replys to
> others..... dory with the broken key board.... and no spell check......
> dory
That (stroke) was the first thing they checked me out for when my first
symptoms hit me. My dr. called my wife & told her to come get me & take
me to the E.R. Then she called the E.R. & filled them in, so when I got
there, they took me right in, no waiting! 
Alex
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