I'm getting really confused and
frustrated. I was having periods of joint
pain for about a year. The docs said it's
not arthritis. Ok what is it - we don't
know. My memory is horrible. My right
arm and neck started to hurt alot then I
started getting needles and pins. They
sent me for an mri. The mri showe a mild
bulging disk in my neck. They said I need
to put my neck in traction 30 minutes 3
times a day. After 6 months of this it
went away. About the same time the arm
thing started, I started to get pains in
my left side near the bottom of my ribs.
The pain moved around. Front of the ribs,
the back, the right side, both sides,
pressure on my chest. Also I started to
notice about 3months ago that I was having
trouble walking a straight line and dizzy
spells. Also I get electric shocks
randomly every couple days that shoot down
my neck to my arms. They did a cat scan
on my chest. Nothing ! They did liver,
kidney, and cancer screening. They did an
mri on my back. (maybe I had some bad
disks- nope). Last time I saw the doc he
said. You seem depressed. Yup I was.
Lots of family stuff going on... But
there was something else I just couldn't
explain. He said he wanted me to get a
cardiac stress test and he wanted me to
see a specialist about depression. As I
was leaving he made an off hand comment
that we needed to get the depression
cleared up because it could be causing
this. He said the next step is to mri my
brain. I thought what's that about? Then
he said "you might have ms". Well i'm on
effexor for depression now. Mentally I
feel better now, but I still hurt I still
get dizzy sometimes, I still walk funny,
sometimes it feels like like i'm walking
like a penguin. Sometimes my head kinda
just jerks. Looking at different forums I
wonder if the really bad laryngeal reflux
I developed 2 years ago is associated.
I just don't know.
The wife went in for her annual physical
today and mentioned to her doctor that I
thought I might have ms. He said "no, ms
doesn't hurt".
You're the jury
what do you think
|
aura
New User, Becoming EHEALTHy
Joined: 17 Dec 2005 Posts: 33 Location: Belgium
Mri Definitely Posted: 12-17-05 15:42pm
Some of your symptoms sound quite
neurological. It also sounds like a
doctor thing. Do you like them? They can
be so....Ms is hardly understood by
neurologists! If there are lesions they
can appear and disappear anywhere in the
central nervous system causing any symptom
you can dream of. No 2 cases are exactly
alike. There are also micro lesions that
go undetected. Anyway, indeed, the mri is
vital but not the only test. The best
person to diagnose based upon the mri is
the radiologist actually. But he should
also know ms well. You don't want ms.
But it is better to know. I would just go
ahead and get a thorough neurological
evaluation. It may mean a day in
hospital. But first s/he will do a
physical for visible "neurological signs".
Settle down if you can. If you were
before, you are not alone now.
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Thanks For the Reply Posted: 12-20-05 14:33pm
Well, since my last posting, i've been to
the cardiologist because they wanted to
make sure that the problems were not
related to my heart. I think also because
my chest has been hurting, and I have been
a lifelong smoker. I quit, by the way,
about 3 weeks ago. They had me do a
cardiac stress test. They seemed to think
that I was ok cardiac wise. They did say,
at that time, that it definitely was not
parkinsons or als.
I went to the rheumatologist last week.
He ran some more tests and they all came
out normal. He did some basic
neurological testing and strongly
reccommended that I go to neurology next.
He volunteered that I don't have cfs or
fibromyalgia. I think that he noticed
some things that were unusual, but he
didn't tell me about it. I personally
noted a couple strange things. When he
was hitting my knee for the knee-jerk
reaction, my head jerked at the same time
that my knee did. I said that I thought
that it was strange, the doctor said he
thought it was too. I also noticed that
when he ran a stick across the sole of my
feet something happened. I could tell
that he was looking for or at something,
and double checking. He kept going back
and forth between my feet probably 10
times. Not sure I understand why.
Anyway, my family doctor is reviewing the
results from cardiology and rheumatology.
I expect that I will be hearing from him
soon. I think that they could have saved
some time and money by sending me straight
to neurology.
Thanks for the support, and no I don't
want ms, but I don need to know what is
going on.
Radar
|
aura
New User, Becoming EHEALTHy
Joined: 17 Dec 2005 Posts: 33 Location: Belgium
I Can Tell It's Hard Posted: 01-13-06 21:58pm
Yah, it sounds like a real process. It's
good you're observing with the Dr.'s. It
can be extremely slow or wham! Your in
emergency. I've had my share of both.
I've learned to keep working adapting to
my circumstances, however weird, and let
the process flow. Neuro problems are of
the most difficult to nail. You can't
even depend upon the best mri's at times.
But what is sometimes missed is the
obvious. I used to keep symptom journals
when in the heat of huge attacks. You
tend to do that because you feel your
brain is being eaten away, although it is
not. I have a heavy form of ms and keep
recovering to a new world. But with the
diary you have your own personal history
in your own language. Most people should
keep one really. Because you end up
seeing so many specialists and your gp has
a million patients only scribblings get
put down. So, a medical diary with
dates, hours and how you were feeling at
that moment is a sure way of tracing
things and seeing the similarity between a
symptom a few years down the line. We
tend to forget - wantingly! - about the
unpleasant details or can exagerate a
symptom that is not dangerous. I know I
can. But having made the list, man I am
happy for it. I can look back to the
horrors at 35 and understand why I can be
so screwed up psychologically now. It
isn't my fault, although "loved ones"
tend to tire and get cynical. Did I
mention the book "sound mind sound body"
by pelletier, md (stanford prof)? Not
going to bother with spelling and syntax
tonight.
Last edited by aura on 02-22-06 18:32pm; edited 1 time in total
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Posted: 01-19-06 14:01pm
Thanks for the support,
in my last post I said that I was awaiting
a call from my gp that he had reviewed my
visits from rheumatology and cardiology
and had a neurology appointment scheduled.
I called and left messages twice, and
even got a call from his assistant saying
that he hadn't forgotten me, but I never
got the call that my records had been
reviewed and had an appointment.
I finally got frustrated and figured out a
work-around. I had been to neurology
about 9 months ago for (at least what they
thought at the time) a pinched nerve at
the c5-6. I called for a return visit
with the same neuro. They said "no
problem" you have been to see him
before.
Went to see the neuro last week. He put
me on amitriptaline to help me sleep
'cause I keep waking up around 3am and
can't get back to sleep. He also put me
on xanax to "help calm my brain down.
His official dx was "multiple symptoms
unable to diagnose at this time". He
didn't seem to want to commit to anything
at the time. To be honest I was pretty
nervous and really didn't think to ask too
many questions. Questions like "what do
you think it is?".
The amitriptaline is really rough because
I feel groggy until noon. Had to stop
taking it. I work in a high paced high
tech job and I can't be groggy like that.
The xanax is really helpful it seems to
calm things down really well, even some of
the pains go way down.
The neuro scheduled me for a brain mri on
jan 23. I'm nervous, but happy at the
same time.
Shooting the tube on monday !
Thanks again
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Posted: 01-24-06 15:44pm
Had the brain mri last night. I know that
the mri technician is not supposed to
offer any information to me regarding what
was seen, but before the mri I said, "i
know that you are not supposed to tell me
what you see, but could you let me know if
you see anything." then I said, "you don't
have to tell me exactly what, just if
there is anything unusual."
after it was over and as I was leaving,
the tech volunteered that there were
several "spots" but didn't look like they
were in the right place.
I'll have to wait for the radiologist
report, and the neurologist. Probably
next week.
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Post Mri Posted: 02-09-06 16:28pm
Well went to neuro last night. He spent
about 20 sevonds looking at my mris, then
said, "you don't have ms, there is nothing
I can do for you." we talked for a while
afterward. Reviewing symptoms. Then told
me that I need to go back to my gp.
Bottom line, he felt that something had
been missed, and it almost seemed as if I
was wasting his time.
Back to square 1
i hope he is right, but I still have
something wrong.
My wife is being very supportive. We are
both happy that it's not ms, her more than
me. Primarily because I still need to
know what is going with me. I'm still not
so sure that the neuro looked into it
carefully enough.
|
willpwr
New User, Becoming EHEALTHy
Joined: 10 Jan 2006 Posts: 14
Pinched Nerve At the C5-6 Posted: 02-09-06 23:56pm
Radar,
i've been following your posts. How did
the neuro determine a pinched nerve at the
c5-6? Just wondering what test he ran to
determine that or did he base that
diagnosis off of the mri results? In
addition, how do you know it's still not
that that is causing your symptoms now
that you've ruled out ms. I'm just
trying to get as many opinions as possible
from everyone cause still to this day, I
refuse to believe I have ms. I do have
something though and the symptoms are
ms-like. It is very frustrating and i'm
constantly in a s**tty mood. My wife
thinks i'm being such a jerk lately cause
I just can't snap out of it.
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
C5-6 Posted: 02-10-06 14:50pm
Willpwr,
i posted a reply to answer you questions,
but so i'm going to do it again. Maybe a
bit shorter this time.
Anyway, they did an mri of my cervical
spine and, to me at least, there didn't
seem to be anything obvious there, but the
neuro was very convinced that it was what
was causing the pain and pins and needles
in my arm.
He said that he was equally convinced that
the c5-6 problem was not related to the
rest of my symptoms.
Your last 2 sentences are very familiar.
My wife said several times "it's all in
your head. Get over it.". After a year
of this she believes that there is really
something wrong. A few nights ago she
commented that she knew that there was
really something wrong. In the evening it
is the worst and she has noticed how
exhausted I am and how I limp and
sometimes have to pull myself up the
stairs.
A few nights ago we went out to red robin
for burgers and I couldn't remember where
how to get there. I had to ask her.
I have a problem with daytime sleepiness,
so about 6 months ago I contacted the
specialist at the hmo sleep center to see
if there was any help. He had me go off
the effexor that I take for add because he
said it was sedating (i know it's not a
standard treatment for add, but it really
helped) anyway he put me on ridalin which
was an extremely bad experience. I got
super depressed and angry at the world and
even considered the big s. My wife
convinced me to go to quit the ridalin and
get back on effexor. I feel better now,
but again back to square 1.
I go back to my family doc today. Don't
know where this will lead, but maybe they
will have some new ideas.
Glad to answer your questions. I don't
want to have ms, but to me at least it's
still the only thing that makes sense.
Aura, if you're out there, I have taken
your advice and created a spreadsheet that
list all of my symptoms and I grade them
from 0 to 3 on a daily basis. It also has
a box for comments and daily specifics.
Gotta go,
radar
|
willpwr
New User, Becoming EHEALTHy
Joined: 10 Jan 2006 Posts: 14
Posted: 02-10-06 17:44pm
Radar,
thanks for the quick response, and for
clarifying.. I must have missed your
earlier post. Starting a spreadsheet or
somekind of diary sounds like a great idea
which i'll start right after posting this.
You know, all day today i've been
researching stuff online and it gets so
frustrating cause you can literally go in
circles researching this crap and never
really get anywhere.. There are so many
opinions, so many different sites that
tell you one thing and another.
Therefore, i've been trying to find the
common denominator in all of this, and it
seems to point more and more towards diet.
In particular the elimination of
saturated fats and trans fats.
Now, i'm not at that point yet where i'm
ready to make a committment like avonex,
interferon or whatever it is they have out
there.
There is another thing that is working
against me as well.. And that's the fact
that I work 3rd shift so my sleep pattern
is really bad. I try to sleep during the
day when I get home but we have a new born
baby so you know how that goes.
Thursday I have an app. With a neuro
thurs, feb 16 (never been to this one
yet), so we'll see what he thinks I should
do. Right now my whole right side of my
body is numb, and i'm having a hard time
typing. Dont mean to sound like a
cry-baby, but this experience can get your
mood down real quick. I know what u mean
about working in a high tech job, I work
in telecom and cannot afford to feel
groggy either....
I dont want to have ms either, but like
you said, it's the only thing that makes
sense!!
Let us know how it went at the family
doc.
I'll post what happens on thursday.
Take care!!
Willpwr.
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Doctor Visit Info Posted: 02-13-06 13:26pm
Willpwr,
please forgive the typos, I feel
positively miserable today!
Spent a good hour with the family doc on
friday. He didn't blow me off or imply
that I was a hypochondriac or
over-stressed.
We came to the conclusion that there are
atleast 2 and possibly 3 problems. Which
is why no one has been able to figure it
out.
The rib pain and associated problems are
probably caused by a problem with my back.
Specifically the 11th thoraic vertibra.
I hurt it about 12 years ago moving rocks.
He thinks that the other problems are
either associated with a reaction to the
blood pressure and cholesterol medication
and/or a problem with adrenal
insufficiency.
He had me go off the meds for a week to
see if anything gets better. This is the
3rd day without the meds, and to tell the
truth I think that i'm actually getting
worse now. Feel like dirt today.
I guess that would imply that it is
adrenal insufficiency.
Will keepo you posted.
He also supported the neuro in his
diagnosis, saying that even though he
spent a very small time looking at the
mri, he had most probably already read the
radiologist report and was just doing a
quick verification.
To whoever reads this, if my family doc is
right, I would strongly suggest that you
do as I am doing and follow up back with
your original doctor. Make them look at
the issues in a different light (look
outside the box is what my own doctor
said).
I would also like to emphasize the symptom
diary, or spreadsheet. When I showed my
spreadsheet to my doc he wasvery
interested and and suggested changes that
would help him in diagnosing the problem.
In the end our health is in our hands!
P.S if my doc is right I will probably be
dropping out of this forum soon.
Thanks for the support
radar
|
aura
New User, Becoming EHEALTHy
Joined: 17 Dec 2005 Posts: 33 Location: Belgium
Re: C5-6 Posted: 02-14-06 14:00pm
radar
wrote:
willpwr,
i posted a reply to answer you questions,
but so i'm going to do it again. Maybe a
bit shorter this time.
Anyway, they did an mri of my cervical
spine and, to me at least, there didn't
seem to be anything obvious there, but the
neuro was very convinced that it was what
was causing the pain and pins and needles
in my arm.
He said that he was equally convinced that
the c5-6 problem was not related to the
rest of my symptoms.
Your last 2 sentences are very familiar.
My wife said several times "it's all in
your head. Get over it.". After a
year of this she believes that there is
really something wrong. A few nights ago
she commented that she knew that there was
really something wrong. In the evening
it is the worst and she has noticed how
exhausted I am and how I limp and
sometimes have to pull myself up the
stairs.
A few nights ago we went out to red robin
for burgers and I couldn't remember where
how to get there. I had to ask her.
I have a problem with daytime sleepiness,
so about 6 months ago I contacted the
specialist at the hmo sleep center to see
if there was any help. He had me go off
the effexor that I take for add because he
said it was sedating (i know it's not a
standard treatment for add, but it really
helped) anyway he put me on ridalin which
was an extremely bad experience. I got
super depressed and angry at the world and
even considered the big s. My wife
convinced me to go to quit the ridalin and
get back on effexor. I feel better now,
but again back to square 1.
I go back to my family doc today. Don't
know where this will lead, but maybe they
will have some new ideas.
Glad to answer your questions. I don't
want to have ms, but to me at least it's
still the only thing that makes sense.
Aura, if you're out there, I have taken
your advice and created a spreadsheet that
list all of my symptoms and I grade them
from 0 to 3 on a daily basis. It also
has a box for comments and daily
specifics.
Gotta go,
radar
hi. Thanks. I've been in a neurological
clinic and recovering from that because it
was really traumatic. Anyway, indeed I
agree about being conscious and objective,
to take control of your own life. But it
is also necessary to listen and read so
that I don't confuse symptoms and can
judge between the big and the small.
While in hospital I learned more than I
could have any other way, and went beyond
the current symptom-otology, reaching back
to early childhood. I realized my
strengths and weakness with the background
of their revalidation program which was
not really suited to me. But that made it
all the better to know more about who I
am. I found out that my biggest problem
physically was sensorial, especially
involving the eyes. That is why I could
not stand large gatherings and even eating
with others. Too much input, and that was
leading to sleeplessness which would lead
to provoking other symptoms. I knew more
about myself than the doctors did. But
they knew more about symptomotology,
having dealt personally and closely with
thousands of patients. Although their
natural tendency toward skepticism was
sometimes unnerving - they have their own
lingo in the neuro community, so always
watch what terms you use! - I tried to
profit from the whole experience and
learned too much to express. I also
realized that they genuinely wanted to
succeed and not fail in making me
better.
I think if a gp is so out of touch as you
describe it might not be a bad a idea to
interview a few others and make a choice.
Whose the client? My current one is ultra
nice and does not know a lot about neuro
problems. But she said I could call her
day or night, and that alone is good
enough for me.
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Update Posted: 02-22-06 16:16pm
Well, went back to the gp again today, he
wanted to draw some blood for aditional
tests. I had done some more research
since I saw him last week when he said
that it might be an adrenal problem.
I came up with a strong possibility of
cushings syndrome. When they drew the
blood today I asked what they were testing
for and the nurse said cortisol. That
confirmed to me that my gp was also
thinking cushings.
Anyway, when I talked with him today he
also confirmed that it was a good
possibility. We had a good long talk and
he is very much on board with me now.
He also reviewed the previous tests done
by cardiology, rheumatology, and
neurology. I think that tis was because I
told him that I was seeing these
specialist and they weren't telling me
anything, except that there are no
apparent problems in their area of
specialization.
He does seem to understand what the issues
are and seems to be commited to making
sure that a correct diagnosis is made.
Anyway, it's a step forward.
Thanks
radar
|
sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Posted: 02-22-06 17:12pm
Hi there! I am very sorry to hear about
all of your problems, I understand what
you are going through, I have been their
and done that! My problem 1st started
out with carpal tunnel syndrome in both
hands and they did surgery on both to
release the pressure then the problem went
to my neck disc problems, pinched neves,
etc., they fused c5&c6, a year later
they fused c6&c7 then I started
having trouble with c4&c5 but the Dr.
Did not want to do anymore surgeries on
me, later my dr swore up & down that I
had ms test after test, then I was
diagnosed with fibrmyalgia and chronic
fatigue syndrome,then I fell, injuring my
foot and they found out that I had rsd but
after it was too late to do anything with
it, so, now I fall a lot, unable to work,
full body pain, go blind part of the time
or my vision becomes blurry a lot, my dr
still feels I have ms. A friend of mine
went through 13 head mri's before they
found her ms. Thei are a lot of drs that
will not touch me with all of my problems
and I believe now adays it has alot to do
with money. I feel that I will just have
to live with what I have and accept it and
move on, they alsso ffound ddd and djd and
rls.
The best to you and yours!
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sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Radar Posted: 02-22-06 17:33pm
Their are so many ssituations out that
resemble ms this day and age. Their are
sooo many times that I do not think no one
knows, I think they just guess as we set
unfortunately and wait for some answers.
I do realize that this was a post from
last year, I am glad that you are finding
out some answers! I do hope that their
is something that they can do to help you
as I realize what suffering and not being
able to be yourself caan be especially
being young and with a family!
|
radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Next Guess ? Posted: 03-06-06 16:46pm
Well, the labs came in last friday. I
don't have cushings disease/syndrome. The
labs came back normal.
My pcp told me on friday that he was going
to have a consult with an internal
medicine specialist (i gather he is
supposed to be some kind of great
diagnostician) to see if they can come up
with a plan of action.
I'm feel completely lost at this point.
I'm not giving up, but I don't have a clue
about what to do next.
I guess all I can do now is just wait.
It's getting hard though.
Whatever this is thats got me is not
letting go. I bought a cane 3 weeks ago
because my right knee was hurting so bad.
Wouldn't you know it, my knee stopped
hurting about that time and now its more
my feet, arm and leg muscles. There is
still the usual. Rib pain, upper
abdominal pain, brain fog, physical and
mental exhaustion, eyelids that are so
swollen in the morning that they touch my
glasses. I can't do anthing physical or I
suffer for days.
It's like i've been out doing hard
physical labor all the time without having
done anything. I wake up in the morning
like that, so if ido anything physical i'm
wiped out for days.
I'll write again when I learn
anything......
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radar
New User, Becoming EHEALTHy
Joined: 02 Nov 2005 Posts: 12 Location: Seattle
Finally An Answer Posted: 03-16-06 14:32pm
Well, this is my last post. It turns out
that I have 2 large cysts in my left
kidney. The implication is that not only
is it causing problems with blood
pressure, but appears to be affecting my
parathyroid. This is what is causing all
of my problems. I don't have a final
determination yet as to what is going to
be done for it, but at least I know.
To all, thank you for your support.
I strongly urge the undiagnosed to not
allow yourselves to be locked into a self
diagnosis. You need to keep pushing
though. You need to push until there is a
reasonable verifiable explaination.
