Aa
WHAT IS WRONG WITH ME?
I need medical help., I have a number of things wrong with me.
Let me first post theBlood and urine abnormalities question and see if anyone can come up with a few ideas>
BLOOD LEVEL ABNORMALITIES (REPEATED TESTS show the same results-that is i have these problems in the blood for the past 2 years ALL the time..I cannot find a doctor or hopsital willing to admit me for diagnosis...
ABNORAMLITIES IN BLOOD
VERY Low Lymphocytes 0.4 range in range 4-14
igh neutrophiphils
High Monocytes
High Absolute Monocytes
LOW ANION GAP 4 (range 7-16) (NEVER had this test done before so I have no old number to compare)
LOW vitamin D 2 years loevel abou 12 (even with taking 50,0000 units a week by mouth)
LOW CD 4 cells about 320
LOW CD 4 Helper cells
Slightly elevated CO2 32 range 22-30
High ALT 86 (I already have fatty liver disease)
RELATED SYMPTOMS:
"REACTIVE" lymph nodes in neck and under left arm...was told they are "reacting" to some
infection, disease process that needs to be diagnosed. The NODES themselves are
not "swollen". They are tender all the time
FATIGUE
PAIN
Cramping in legs even while in bed
random JAW pain (CT scan of jaw unremarkable)
SYMPTOMS
Itching of testicles (NO FUNGUS or rash seen , NOT an STD,
NO NOTICEABLE RASH ANYWHERE except on left arm small area that does not go away
Orthostatic Hypotension
Autonomic nerve dysfunction causing changes in blood pressure and pulse
POSSIBLE CSF LEAK or block
Possible undiagnosed neurological condtion
Possible cancer??? where??
HIGH SODIUM in Urine random (168 in range 30-90)
Itching in Testes (no outside fungus or rash seen)
UNRELATED SYMPTIOM
CONSTANT head pain and pressure for about 12 months
2 MRI's of spine with COIL study reveal "loculated fluid in the C7-T1 area"
BUT--CT/MYLEGRAM does NOT show any leak
(I had a 9 hour spinal cervical surgery 2/08 with metal plates , screws,. rods from C3 all down to T1)
HAD MRI WITH GALLIDIUM with PRe medICATION FOR ALLERGY
and my HEART rate went to 140 bpm and I needed to be hopsitalized
CREATINE was elevated--I have a history of Kidney stones in 2008 due to being placed on TOPOMAX
HIGH Gluose in bLOOD---- yet test for Diabetes was negative
ANY HE:LP where I can do for diagnlosis..I was seen by regular internists
and a CLINIC hematologist BOTH of whom were unwilling to do more advanced
diagnostic testing or blood workl. They just keep repeating the SAME tests
and getting the SAME findings. I need HELP
Let me first post theBlood and urine abnormalities question and see if anyone can come up with a few ideas>
BLOOD LEVEL ABNORMALITIES (REPEATED TESTS show the same results-that is i have these problems in the blood for the past 2 years ALL the time..I cannot find a doctor or hopsital willing to admit me for diagnosis...
ABNORAMLITIES IN BLOOD
VERY Low Lymphocytes 0.4 range in range 4-14
igh neutrophiphils
High Monocytes
High Absolute Monocytes
LOW ANION GAP 4 (range 7-16) (NEVER had this test done before so I have no old number to compare)
LOW vitamin D 2 years loevel abou 12 (even with taking 50,0000 units a week by mouth)
LOW CD 4 cells about 320
LOW CD 4 Helper cells
Slightly elevated CO2 32 range 22-30
High ALT 86 (I already have fatty liver disease)
RELATED SYMPTOMS:
"REACTIVE" lymph nodes in neck and under left arm...was told they are "reacting" to some
infection, disease process that needs to be diagnosed. The NODES themselves are
not "swollen". They are tender all the time
FATIGUE
PAIN
Cramping in legs even while in bed
random JAW pain (CT scan of jaw unremarkable)
SYMPTOMS
Itching of testicles (NO FUNGUS or rash seen , NOT an STD,
NO NOTICEABLE RASH ANYWHERE except on left arm small area that does not go away
Orthostatic Hypotension
Autonomic nerve dysfunction causing changes in blood pressure and pulse
POSSIBLE CSF LEAK or block
Possible undiagnosed neurological condtion
Possible cancer??? where??
HIGH SODIUM in Urine random (168 in range 30-90)
Itching in Testes (no outside fungus or rash seen)
UNRELATED SYMPTIOM
CONSTANT head pain and pressure for about 12 months
2 MRI's of spine with COIL study reveal "loculated fluid in the C7-T1 area"
BUT--CT/MYLEGRAM does NOT show any leak
(I had a 9 hour spinal cervical surgery 2/08 with metal plates , screws,. rods from C3 all down to T1)
HAD MRI WITH GALLIDIUM with PRe medICATION FOR ALLERGY
and my HEART rate went to 140 bpm and I needed to be hopsitalized
CREATINE was elevated--I have a history of Kidney stones in 2008 due to being placed on TOPOMAX
HIGH Gluose in bLOOD---- yet test for Diabetes was negative
ANY HE:LP where I can do for diagnlosis..I was seen by regular internists
and a CLINIC hematologist BOTH of whom were unwilling to do more advanced
diagnostic testing or blood workl. They just keep repeating the SAME tests
and getting the SAME findings. I need HELP
Please read my update. It is Quite an adventure.
AS some of you know, I was slated to go to nashville's
Vanderbilt autonomic Dysfunction Department to
check out my erratic Pulse and auto-immiunue symptoms.
Well--in the past Month--I had to go to the local
(Beth Israel) emergency room several times.
MY pulse was 143 and my blood pressure
was very high 168/118. it varied a few points
durning the few days I went to the E/r but
basically those were the numbers.
instead od ADMITTING ME with these dangerous numbers
the E/r sent me HOME. I protested but no one
would admit me. They blamed the symptoms
on Autonomic Dysfunction. I argued that ONLY
the PULSE had been affected and that it was only
an ortho-static issue (my pulse would go back down
if I layed down). This time it would NOT go down
and I had a VERY high blood pressure.
Still, they sent me home. Two days later
the same symptoms appeared and I once
again returned to the emergency room.
This time They gave me a choice--
do a heart stress test---or do
a cardiac catherization and see
(AS I TOLD THEM I SUSPECT)
i have a Block in an artery.
I chose the Catherization
and they told me I hav e FOUR
arteries witrh Stenosis---
One at 74%, one at 60%
one at 50% and one at 35%.
They told me thet would
put stents in the MOST
clogged artery. They would
be UNABLE to d oa stress
test to see if there is any
heart damage because they
WAITED SO LONG befoire
DOING ANYTHING.
They put two metal stents
(they should have used plastic)
in the right coronary artery
and told me I would either
need BY PASS surgery
for the other 3 arteries
OR stents put in 2 of the other
three clogged arteries. they could
not stent the 4th one-they said it is
too small to stent. Since then,
I hyave had chest pain and
shortness of breathe.
They put me on PLAVIX
and Aspirin and Zocar
and they make me sick.
So--I made an appointment with
a cardiac surgeon at mount Sinai
because after the POOR CARE
(or lack of) care at beth Israel
I wanted to try a better hopsitaL.
tHE OFFICE of david Adams
said this is very serious and want
me to see his associate ASAp
for ;possible Quadruple By pass.
They are awaiting the Stent/Catherization
films to be sent to them,.
So-I spoke to my neurosurgeon and he
said NOW YOU CANT GO TO VANDERBILT
absolutely NOT. he wanted to know why they
tooka YEAR from the time your Blood pressure
and pulse symptoms appeared before they
did a catherization and i told him ebcause they
didnt BELIEVE ME that my heart may have
a problem BESIDES an autonomic problem.
Indeed sending me home fro mthe E/r
with a Pulse of confirms they DIDNT CARE.
Next--they LOST my CSF spinal Tap fluid anmd
most of the results at Mount Sinai. The surgeon
could not get the results and right now
I have acomplaint filed with the State.
The surgeon said ABSOLUTELY NOT
can I have another Spinal tap.
I had to have blood patch surgery
after this. So I may have to SUE them (mount
Sinai) dor NEGLIGENCE for losing my
CSF fluid. I am debating whether or not
to file suit against beth Israel for NEGLIGENCE
(sending me home from the E/r with a piulse
of 143 and NOT testing my heart for clogs
till I almost died (and this is the hopsital
I go to on a regular basis--they just WOULDNT
do the cardiac catherization until I was
newar death.
So I cant go to NASHVILLE
My CSF fluid is LOST
I need By PASS surgery
And I cannot tolerate the plavix and Zocar
Both give me a rash all over,
i am taking Benadryl when I take
the drug but I still break out i na rash.
YES--this is now very serious.
I am not sure if Ieven HAVE
an autonomic dysfdunction-
the erratic Blood pressure'
was CAUSED by the clogged arteries.
The High Pulse was probably also
affected by my diminished blood flow
AND I probably DO have orthostatic
Hypotension as WELL (two differrent
problems). I already had been diagnosed
with a POSITIVE TILT TABLE test
last year----but I am not sure the stenosis
in my arteries didnt ALSO play a part.
Right now--I have shortnerss of breath,
nasuea and chest pain since they
put the stents in. And I am awaiting
to see the cardiac By Pass Surgeon
and waiting to see if they ever FIND
my lost CSF fluid.
I was advised AGainst OPEN BY PASS
at Beth isarael--because I was told
the doctor who would accept my
insurance is NOT a good surgeon
(I wont put his name here fotr legal
reasons). SO I am going to see
the partner of David Adams.
David Adams is listed as
one of the best Cardiac surgeons.
I do not know if my heart was
damaged by the long wait
before they did a catherization on me.
I will also be UNABLE to arrive
at a diagnosis regarding my
Spinal headache and auto-immune
problem because mount Sinai
LOST my CDSF fluid, which
is negligence and POSSIBLY
malpractice (I am unsure what
the DAMAGE is by them LOSING
my fluid---but it DOES prevent\
me from being diagnosed and
I had surgery for nothing
(Blood patch and a spinaL tap
for nothing) if they really lost the
CSF.
Any ideas?
AS some of you know, I was slated to go to nashville's
Vanderbilt autonomic Dysfunction Department to
check out my erratic Pulse and auto-immiunue symptoms.
Well--in the past Month--I had to go to the local
(Beth Israel) emergency room several times.
MY pulse was 143 and my blood pressure
was very high 168/118. it varied a few points
durning the few days I went to the E/r but
basically those were the numbers.
instead od ADMITTING ME with these dangerous numbers
the E/r sent me HOME. I protested but no one
would admit me. They blamed the symptoms
on Autonomic Dysfunction. I argued that ONLY
the PULSE had been affected and that it was only
an ortho-static issue (my pulse would go back down
if I layed down). This time it would NOT go down
and I had a VERY high blood pressure.
Still, they sent me home. Two days later
the same symptoms appeared and I once
again returned to the emergency room.
This time They gave me a choice--
do a heart stress test---or do
a cardiac catherization and see
(AS I TOLD THEM I SUSPECT)
i have a Block in an artery.
I chose the Catherization
and they told me I hav e FOUR
arteries witrh Stenosis---
One at 74%, one at 60%
one at 50% and one at 35%.
They told me thet would
put stents in the MOST
clogged artery. They would
be UNABLE to d oa stress
test to see if there is any
heart damage because they
WAITED SO LONG befoire
DOING ANYTHING.
They put two metal stents
(they should have used plastic)
in the right coronary artery
and told me I would either
need BY PASS surgery
for the other 3 arteries
OR stents put in 2 of the other
three clogged arteries. they could
not stent the 4th one-they said it is
too small to stent. Since then,
I hyave had chest pain and
shortness of breathe.
They put me on PLAVIX
and Aspirin and Zocar
and they make me sick.
So--I made an appointment with
a cardiac surgeon at mount Sinai
because after the POOR CARE
(or lack of) care at beth Israel
I wanted to try a better hopsitaL.
tHE OFFICE of david Adams
said this is very serious and want
me to see his associate ASAp
for ;possible Quadruple By pass.
They are awaiting the Stent/Catherization
films to be sent to them,.
So-I spoke to my neurosurgeon and he
said NOW YOU CANT GO TO VANDERBILT
absolutely NOT. he wanted to know why they
tooka YEAR from the time your Blood pressure
and pulse symptoms appeared before they
did a catherization and i told him ebcause they
didnt BELIEVE ME that my heart may have
a problem BESIDES an autonomic problem.
Indeed sending me home fro mthe E/r
with a Pulse of confirms they DIDNT CARE.
Next--they LOST my CSF spinal Tap fluid anmd
most of the results at Mount Sinai. The surgeon
could not get the results and right now
I have acomplaint filed with the State.
The surgeon said ABSOLUTELY NOT
can I have another Spinal tap.
I had to have blood patch surgery
after this. So I may have to SUE them (mount
Sinai) dor NEGLIGENCE for losing my
CSF fluid. I am debating whether or not
to file suit against beth Israel for NEGLIGENCE
(sending me home from the E/r with a piulse
of 143 and NOT testing my heart for clogs
till I almost died (and this is the hopsital
I go to on a regular basis--they just WOULDNT
do the cardiac catherization until I was
newar death.
So I cant go to NASHVILLE
My CSF fluid is LOST
I need By PASS surgery
And I cannot tolerate the plavix and Zocar
Both give me a rash all over,
i am taking Benadryl when I take
the drug but I still break out i na rash.
YES--this is now very serious.
I am not sure if Ieven HAVE
an autonomic dysfdunction-
the erratic Blood pressure'
was CAUSED by the clogged arteries.
The High Pulse was probably also
affected by my diminished blood flow
AND I probably DO have orthostatic
Hypotension as WELL (two differrent
problems). I already had been diagnosed
with a POSITIVE TILT TABLE test
last year----but I am not sure the stenosis
in my arteries didnt ALSO play a part.
Right now--I have shortnerss of breath,
nasuea and chest pain since they
put the stents in. And I am awaiting
to see the cardiac By Pass Surgeon
and waiting to see if they ever FIND
my lost CSF fluid.
I was advised AGainst OPEN BY PASS
at Beth isarael--because I was told
the doctor who would accept my
insurance is NOT a good surgeon
(I wont put his name here fotr legal
reasons). SO I am going to see
the partner of David Adams.
David Adams is listed as
one of the best Cardiac surgeons.
I do not know if my heart was
damaged by the long wait
before they did a catherization on me.
I will also be UNABLE to arrive
at a diagnosis regarding my
Spinal headache and auto-immune
problem because mount Sinai
LOST my CDSF fluid, which
is negligence and POSSIBLY
malpractice (I am unsure what
the DAMAGE is by them LOSING
my fluid---but it DOES prevent\
me from being diagnosed and
I had surgery for nothing
(Blood patch and a spinaL tap
for nothing) if they really lost the
CSF.
Any ideas?
I don't have private insurance and my 'available" cash due to many medical problems is long gone right now. However--I DO appreciate
the info you provided to me. I just saw a cardiologist at Mount Sinai
as my Pulse and Blood pressure are still VERY erratic. My pulse ewas 49 and 2 minutes later it was 125 ! This type of autonomic change occurs all the time.,I can pass out. and the cardiologist confirmed "You have an autonomic dysfunction. I don't treat that. You will have to look further". So I will take the info you provided and when possible....see if I can see either of these doctors. Thank you.
David
the info you provided to me. I just saw a cardiologist at Mount Sinai
as my Pulse and Blood pressure are still VERY erratic. My pulse ewas 49 and 2 minutes later it was 125 ! This type of autonomic change occurs all the time.,I can pass out. and the cardiologist confirmed "You have an autonomic dysfunction. I don't treat that. You will have to look further". So I will take the info you provided and when possible....see if I can see either of these doctors. Thank you.
David
Hi... also try Dr. Richard Mueller. A cardio on 55th and 1st ave. 212-593-9800. No one in the office will know anything, just ask for a consult, or to speak directly with him. Also, depending on your finances, I know a great doc (out of network) who can look at your bloodwork. He would order new tests for you. But, he is a fortune. Your first visit could cost upwards of $800. And follow ups will be atleast $250. But he is brilliant, and was the only person to diagnose me correctly with POTS. Leo Galland 212-989-6733. 5th ave at 20th St. Good luck!
PS--I was scheduled for a Spinal Tap and Blood Patch Surgery
tyhis month...to check for spina lelak or other
neurological problems...
but the C DIFF forced my doc tors
to cancel that admission this month,,,,
so now I have no idea when they
will try to admit me...they
cant do the spinal
while the C DIFF
is active..
tyhis month...to check for spina lelak or other
neurological problems...
but the C DIFF forced my doc tors
to cancel that admission this month,,,,
so now I have no idea when they
will try to admit me...they
cant do the spinal
while the C DIFF
is active..
Hello
I apologize for not replying sooner.
I do appreciate your help.
I am trying to follow up ,.
MY Neurosurgeon checked
and he AGREED..the nearest
Place (hopsital) willing'to
work with me on my
autonomic dysfunction is
Vanderbilt In Memphis,,,
but I am unable to FLY
with a possible spinal fluid leak
and unable to sit upright.
I also cant get ambulanxe'
approval...YET.
A number of forms must be filled out
and approved for me
to be accepted as a patient
Outof State
Further--and more relevant
at this time
I beleive I HAVE FOUND
THE SOURCE of my White
(neutrophil and Lymphocyte)
irregularities...
on a hunch...
they did a check
and I haver come up
Positive..for C DIFF..
the RARE kind,,,,
probably STRAIN B.
It is not being cured
with anti-biotics rigght now.
So i have been really tired
and in abdominal pain for the past
few weeks.
This has nothing to do with the
other problems on going that
have yet to be diagnosed,.
If symptoms dont improve
soon..they want to admit to
here to Hospital in NY
but they will do NOTHING
about my Aurtonomic heart
poroblem, blood disorders,
Lymph glands and spinal
fluid problem,,,
they will ONLY address the
GI issue...
SO--looks like a long time..
before I can say
I FEEL GOOD
Will keep you updated
THANK YOu
HAPPY NEW YEAR
David
I apologize for not replying sooner.
I do appreciate your help.
I am trying to follow up ,.
MY Neurosurgeon checked
and he AGREED..the nearest
Place (hopsital) willing'to
work with me on my
autonomic dysfunction is
Vanderbilt In Memphis,,,
but I am unable to FLY
with a possible spinal fluid leak
and unable to sit upright.
I also cant get ambulanxe'
approval...YET.
A number of forms must be filled out
and approved for me
to be accepted as a patient
Outof State
Further--and more relevant
at this time
I beleive I HAVE FOUND
THE SOURCE of my White
(neutrophil and Lymphocyte)
irregularities...
on a hunch...
they did a check
and I haver come up
Positive..for C DIFF..
the RARE kind,,,,
probably STRAIN B.
It is not being cured
with anti-biotics rigght now.
So i have been really tired
and in abdominal pain for the past
few weeks.
This has nothing to do with the
other problems on going that
have yet to be diagnosed,.
If symptoms dont improve
soon..they want to admit to
here to Hospital in NY
but they will do NOTHING
about my Aurtonomic heart
poroblem, blood disorders,
Lymph glands and spinal
fluid problem,,,
they will ONLY address the
GI issue...
SO--looks like a long time..
before I can say
I FEEL GOOD
Will keep you updated
THANK YOu
HAPPY NEW YEAR
David
PS
SORRY I forgot to SPELL CHECK before sending the lats Note--if anything is not understood--I will rephrase. than kyou
SORRY I forgot to SPELL CHECK before sending the lats Note--if anything is not understood--I will rephrase. than kyou
hello
tHANK YOU FOR all the information above. I will begin to call and see if anyone is willing to see me. I haver to leave NYU out--they do not participate in my insurance plan and therefore I wonty be allowed to use them (They dont take outside referrals or accept managed care insurance and they are not 'allowed" to treat me without 'permission" ) SO I cant go to nyu.
I am surprised there is an autonomic dysfunction department at Mount Sinai --I go to Mount Sinai,. My surgeon is at that hospital and he could not find anyone at this hopsital who deals in this problem.
My surgeon is worried if he does more spianl surgery (which he is planning) with my heart UNSTABLE under anesthesia it might cause serious heralth risks. SO he would prefer they get myu autonomic dysfunction under control before he attempts more spinal surgery.
I have had to wear a neck brave for the past 2 years because of the spinal headache and the probable incomplete fusion at C3-4 where he wants to go back in and fuse it proiperly.
As far as the autonomic problem....I will see if anyone on the list you sent me is willing ot see me,. Also---I beleive you wanted to know if I had a SPECIFIC kind of Tilt Table test--not jjust for orthostatic hypotension ??? for POTS which is not exactly the same thing--IS THIS CORRECT?> if so--I hvae to ask the cardiologist I see if he can order this test--they may not offer it at my hopsital (they do NOT have autonomic dysfunction center at My hospital --we have checked)
As far as the SPINAL headache--the CAUSE nereds to be found. It can be several things.....a)The surgery B)Scar tissue fro mthe surgery causing a tiny block in the flow of spinal fluid c)A tiny LEAK that is pOISTIONAL related--when I lay down the fluid is stable when I STRESS my neck by sitting up (positional change) then it might have a slight leak---they cannot do a SITTING UP spinal tap or MRZI. That is why I am beign re admitted soon for a SPINAL TAP and another test. including a BLOOD PATCH...shich will CLOSE any spinal leak even if they cannot see it !! C)The spinalk headache could be the TRauma OF BEING DROPPED BY 2 CARELESS ambulance workers D)ity could be related (highly unlikely but posisble) to the autonomic dynsfunction of the heart---heart rate goes up , pulse changes--could cause a headache. But I have the headache whe ni am NOT under pusle racing...so we dont put much into that. it is worse whe nI wake up, worse whewn I stand or sit up. But not iMMEDATELY, slow, grtadula getting worse. They have me on CAFFEINE all day for this...they dont know the origin..so the random treatment for a spinal heacache is caffeine.
Lastly do you have any idea on a LOW anion GAP--the medical refererence ays it can be BROMIDE tococity (??? I have no idea how I could have gotten that) among a lis tof major disorders it can cause.
Thank you FOR ALL YOURT help so far. I have npot given up==but this treatment is extremely dragged out and I perobably need more surgery soon so--I am juts tired of being hosue confined and not improving.
DAVID
tHANK YOU FOR all the information above. I will begin to call and see if anyone is willing to see me. I haver to leave NYU out--they do not participate in my insurance plan and therefore I wonty be allowed to use them (They dont take outside referrals or accept managed care insurance and they are not 'allowed" to treat me without 'permission" ) SO I cant go to nyu.
I am surprised there is an autonomic dysfunction department at Mount Sinai --I go to Mount Sinai,. My surgeon is at that hospital and he could not find anyone at this hopsital who deals in this problem.
My surgeon is worried if he does more spianl surgery (which he is planning) with my heart UNSTABLE under anesthesia it might cause serious heralth risks. SO he would prefer they get myu autonomic dysfunction under control before he attempts more spinal surgery.
I have had to wear a neck brave for the past 2 years because of the spinal headache and the probable incomplete fusion at C3-4 where he wants to go back in and fuse it proiperly.
As far as the autonomic problem....I will see if anyone on the list you sent me is willing ot see me,. Also---I beleive you wanted to know if I had a SPECIFIC kind of Tilt Table test--not jjust for orthostatic hypotension ??? for POTS which is not exactly the same thing--IS THIS CORRECT?> if so--I hvae to ask the cardiologist I see if he can order this test--they may not offer it at my hopsital (they do NOT have autonomic dysfunction center at My hospital --we have checked)
As far as the SPINAL headache--the CAUSE nereds to be found. It can be several things.....a)The surgery B)Scar tissue fro mthe surgery causing a tiny block in the flow of spinal fluid c)A tiny LEAK that is pOISTIONAL related--when I lay down the fluid is stable when I STRESS my neck by sitting up (positional change) then it might have a slight leak---they cannot do a SITTING UP spinal tap or MRZI. That is why I am beign re admitted soon for a SPINAL TAP and another test. including a BLOOD PATCH...shich will CLOSE any spinal leak even if they cannot see it !! C)The spinalk headache could be the TRauma OF BEING DROPPED BY 2 CARELESS ambulance workers D)ity could be related (highly unlikely but posisble) to the autonomic dynsfunction of the heart---heart rate goes up , pulse changes--could cause a headache. But I have the headache whe ni am NOT under pusle racing...so we dont put much into that. it is worse whe nI wake up, worse whewn I stand or sit up. But not iMMEDATELY, slow, grtadula getting worse. They have me on CAFFEINE all day for this...they dont know the origin..so the random treatment for a spinal heacache is caffeine.
Lastly do you have any idea on a LOW anion GAP--the medical refererence ays it can be BROMIDE tococity (??? I have no idea how I could have gotten that) among a lis tof major disorders it can cause.
Thank you FOR ALL YOURT help so far. I have npot given up==but this treatment is extremely dragged out and I perobably need more surgery soon so--I am juts tired of being hosue confined and not improving.
DAVID
I am going to ask a friend of mine on here to have a look at your posts, she is a moderator on the dysautonomia (autonomic dysfunction) forum. She has way more experience than me in autonomic problems.
Surgery itself can be a direct cause for a person to develop autonomic dysfunction. Or there are a host of other causes. Although it is possible that it could be linked to the problems with your spine. I have to be honest and say I do not know anything about your spinal problems but I do totally understand how you feel being so unwell and with no answers. I will do my best to help you.
If your heartrate is increasing when upright then there is a possibility that you may have developed POTS and this is adding to your original problems.
The doctor I mentioned above is actually located in Florida, sorry this was my mistake but I have put his details below incase you would want to see him:
Dr. Charles Randy Thompson
8550 University Parkway
Pensacola, FL 32514
850-969-7990
Below are several doctors in NY that can dx and treat autonomic dysfunction:
Svetlana Blitshteyn, MD
835 Hopkins Road
Williamsville, NY 14221
716-531-4598
Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.
Mount Sinai School of Medicine
Autonomic Disorders Research and Treatment Program
Department of Neurology, Box 1052
Mount Sinai Medical Center
One Gustave L. Levy Place
New York, NY 10029
212-241-7315
Autonomic Laboratory
Treats adults
Dr. Kiril Kiprovski
Department of Neurosciences
Hospital for Joint Diseases
301 E. 17th Street
New York, NY 10003
212-598-2375
POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Orthostatic Hypotension
Autonomic Laboratory
Treats adults
Dr. Ludmilla Bronfin
650 First Avenue., 7th Floor
New York, New York 10016
212-532-6298
POTS & NCS
Treats adults
Dr. Max Hilz
New York University
Department of Neurology
550 First Ave.
New York, NY 10016
212-686-7500 ext. 7755
POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Familial Dysautonomia, Diabetic Autonomic Neuropathy
Autonomic Laboratory
Lindsey Lee Lair, MD
35 East 35 St. Suite 202
New York, NY 10016
917-991-1992
Louis H. Weimer
Neurological Institute of New York
710 W. 168th Street
New York, NY 10032
212-305-1330
Orthostatic Intolerance (POTS), PAF/ Secondary Autonomic Failure, Multiple System Atrophy
Autonomic Laboratory
Treats adults
Hopefully from the above list you will fond someone to help.
Please do not give up hope on your condition being improved, or at least controlled, their are several meds that can be tried for you to try and stabilize your autonomic dysfunction - keep pushing and pushing.
I have had 3 spinal aneasethics and for months after each one I suffered really severe headaches so I can understand the agony your headaches cause you. Try and remain positive that you can be relieved from some of the pain you are enduring. Their are people on these forums who will help you and you are in their prayers.
Surgery itself can be a direct cause for a person to develop autonomic dysfunction. Or there are a host of other causes. Although it is possible that it could be linked to the problems with your spine. I have to be honest and say I do not know anything about your spinal problems but I do totally understand how you feel being so unwell and with no answers. I will do my best to help you.
If your heartrate is increasing when upright then there is a possibility that you may have developed POTS and this is adding to your original problems.
The doctor I mentioned above is actually located in Florida, sorry this was my mistake but I have put his details below incase you would want to see him:
Dr. Charles Randy Thompson
8550 University Parkway
Pensacola, FL 32514
850-969-7990
Below are several doctors in NY that can dx and treat autonomic dysfunction:
Svetlana Blitshteyn, MD
835 Hopkins Road
Williamsville, NY 14221
716-531-4598
Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.
Mount Sinai School of Medicine
Autonomic Disorders Research and Treatment Program
Department of Neurology, Box 1052
Mount Sinai Medical Center
One Gustave L. Levy Place
New York, NY 10029
212-241-7315
Autonomic Laboratory
Treats adults
Dr. Kiril Kiprovski
Department of Neurosciences
Hospital for Joint Diseases
301 E. 17th Street
New York, NY 10003
212-598-2375
POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Orthostatic Hypotension
Autonomic Laboratory
Treats adults
Dr. Ludmilla Bronfin
650 First Avenue., 7th Floor
New York, New York 10016
212-532-6298
POTS & NCS
Treats adults
Dr. Max Hilz
New York University
Department of Neurology
550 First Ave.
New York, NY 10016
212-686-7500 ext. 7755
POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Familial Dysautonomia, Diabetic Autonomic Neuropathy
Autonomic Laboratory
Lindsey Lee Lair, MD
35 East 35 St. Suite 202
New York, NY 10016
917-991-1992
Louis H. Weimer
Neurological Institute of New York
710 W. 168th Street
New York, NY 10032
212-305-1330
Orthostatic Intolerance (POTS), PAF/ Secondary Autonomic Failure, Multiple System Atrophy
Autonomic Laboratory
Treats adults
Hopefully from the above list you will fond someone to help.
Please do not give up hope on your condition being improved, or at least controlled, their are several meds that can be tried for you to try and stabilize your autonomic dysfunction - keep pushing and pushing.
I have had 3 spinal aneasethics and for months after each one I suffered really severe headaches so I can understand the agony your headaches cause you. Try and remain positive that you can be relieved from some of the pain you are enduring. Their are people on these forums who will help you and you are in their prayers.
They do not know the EXACT cause of the autonomic dysfunction..it started shortly after the surgery. It is either the anesthesia (too long) or the length of surgery. This was an unexpected complication, As far as I know the surgeon did not do any mechanical thing wrong (placement of rods, screws, etc). i never had this pulse or blood pressure problem prior to the surgery,.
I only know of ONE autonomic doctor in new York...Dr Charles kaufman and he only deals in ONE specific type of autonomic dysfunction. I spoke with hi mand he said he would not he able to help me and didnt know where I can go. Do you know what hospital this doctor you mention is affiliated with?
My resting pulse is only fine when I do not DO anything such as walk a couple blocks...then my resting pulse stays over 100 for a while which puts a strain on my heart, So right now between the posisble spinal leak or block of CSZF fluid (I am getting a spinal tap i na few weeks to see if the pressure is disrupted, a brain MRI diod not show a CSF flow problem, but 2 MRI with coil studies confirm 'loculated" spinal flkuid at C7 - T1. I had surgery from C3-T1. Iwas dropped off the curb by a pair of careless ambulance drivers last year..i was told even a hard SNEEZE can cause a spinal fluid leak...i was dopped about 18 inches without warning....I decveloped a sterady headache a few months later that has not diminshed. They are trying to fidn the cause....whether from my spine or the autronmomic problem.
The fact 2 MRi's show spinal fluid trapped, but the CT /Myelegram doesnt show a leak.....has led the surgeon to do a spinal tap to check further.
As far as the 'resting pulse" it is normal if I do not stress my heart in any way. If I walk, or am stressed the pulse races, quite a long time.
It required emergecy hopsitalization 2 weeks ago. My blood pressure is now erratic (it was NOT, ever, prior to the surgery). I have orthostatic hypotension now. Laying down it is usually normal (between 100/60 and 130/90. When I stand up it changes quite a bit.It can go UP ro DOWN (usually down when I stand up) . Causes neausea and dizziness...I now have tro be careful when I stand up.
heart tests (halter monitor, 48 hour (negative) EKG, (just showed sinus tachycardia), they are again attributing this to autonomic [problems.
My ANION gap is also LOW..another mystyery.
What is going on seems to be 2 different problems
A)autonomic dysfunction causing erratic pulse and blood pressure wnen standing, and stressed
and
B)A "pressure" headache from the back of my head to the temples.
(temporal arteritis was ruled out). This headache is worse when I wake up and worse the longer I sit up. But not IMMEDIATELY (in other words I dont immediately get a worse headache when sitting up--it is Gradual. I was told that is not the "usua;" pattern of a spinal leak,.
I also have a probab;ly unufsed vertabrea fro mthis surgery at C3-4 and the surgeon will not allow me to remove the neck brace if the area has not fused within 45 days. He would want to go back in and try and fuse this. But with the spinal (?>)O headache and autonomic stress problem....he wants to get THAT under control because we are worried my heart will be too stressed. he has been unable to find a doctor willing ort able to help me. I also have been unable. I called 8 major New York hosptials. none have an autonomic dysfunc tion department. nearest one my doctor knows of is in Memphis.
I am now confined to an ambulance for long trips and am forced to wear a neck brace indfefintely. i am 49. I have been quite a mess for 2 years now. icannot sdo anything. I am confined to 'rest" and ambiulance to go out. not a good situation.
let me know if you have any suggestion...I am very confused about the 'pressure " headache (feels like someone is pressing on my head rather than a migraine or typical headache. It is also possible scar tissue fro mthe surgery ids 'blocking' the proper flow of spinal fluid and when I sit up (chanr positions the strain on my neck is causing a headache...but there is no 'fix' to that. they cannot SEE scar tissue on ANY type of test. I was Told they can hardly get needles into my neckl for pain injections. The surgeon recontructed EVERY disc level with rods, screws, and metal plates AND rebuolt a portion of the ligaments with a support rod. I was told PREVIOUSLY my neck was NOT as bad as I felt. Thety were wrong..when the surgeon got inside...what her thought would be a 4 hour procerdure tourned into 9 hours..every disc level was herniated and in a state of complete collapse. This was my third cervical surgery. the original siurgeon did NOT use a Disc artifact to stabiilze when he removed the firts herniated disc leading to all the other discs herniating over time. (No I could not file any legal damages against him because it took LONGER than 2 years for them to figure out he should have stabiulized the neck with a gel disc replacement rtather than let one side autofuse leav ing the neck in a stateod constant stress. So since 1992 I have been disabled.
let me know if you can come up with anything...I have already been through EVERY pain treatment possible before the surgeon did this third surgery and STILL go to pain management...they told me "we do not think in your condition your pain is going to improve, we are just trying to keep you from getting worse". I dont anticipate a recovery, I aam just trying to find a wa yto stabilize the autonomic heart problem and to find a CAUSE to the pressure headache,.
thank you.
David
I only know of ONE autonomic doctor in new York...Dr Charles kaufman and he only deals in ONE specific type of autonomic dysfunction. I spoke with hi mand he said he would not he able to help me and didnt know where I can go. Do you know what hospital this doctor you mention is affiliated with?
My resting pulse is only fine when I do not DO anything such as walk a couple blocks...then my resting pulse stays over 100 for a while which puts a strain on my heart, So right now between the posisble spinal leak or block of CSZF fluid (I am getting a spinal tap i na few weeks to see if the pressure is disrupted, a brain MRI diod not show a CSF flow problem, but 2 MRI with coil studies confirm 'loculated" spinal flkuid at C7 - T1. I had surgery from C3-T1. Iwas dropped off the curb by a pair of careless ambulance drivers last year..i was told even a hard SNEEZE can cause a spinal fluid leak...i was dopped about 18 inches without warning....I decveloped a sterady headache a few months later that has not diminshed. They are trying to fidn the cause....whether from my spine or the autronmomic problem.
The fact 2 MRi's show spinal fluid trapped, but the CT /Myelegram doesnt show a leak.....has led the surgeon to do a spinal tap to check further.
As far as the 'resting pulse" it is normal if I do not stress my heart in any way. If I walk, or am stressed the pulse races, quite a long time.
It required emergecy hopsitalization 2 weeks ago. My blood pressure is now erratic (it was NOT, ever, prior to the surgery). I have orthostatic hypotension now. Laying down it is usually normal (between 100/60 and 130/90. When I stand up it changes quite a bit.It can go UP ro DOWN (usually down when I stand up) . Causes neausea and dizziness...I now have tro be careful when I stand up.
heart tests (halter monitor, 48 hour (negative) EKG, (just showed sinus tachycardia), they are again attributing this to autonomic [problems.
My ANION gap is also LOW..another mystyery.
What is going on seems to be 2 different problems
A)autonomic dysfunction causing erratic pulse and blood pressure wnen standing, and stressed
and
B)A "pressure" headache from the back of my head to the temples.
(temporal arteritis was ruled out). This headache is worse when I wake up and worse the longer I sit up. But not IMMEDIATELY (in other words I dont immediately get a worse headache when sitting up--it is Gradual. I was told that is not the "usua;" pattern of a spinal leak,.
I also have a probab;ly unufsed vertabrea fro mthis surgery at C3-4 and the surgeon will not allow me to remove the neck brace if the area has not fused within 45 days. He would want to go back in and try and fuse this. But with the spinal (?>)O headache and autonomic stress problem....he wants to get THAT under control because we are worried my heart will be too stressed. he has been unable to find a doctor willing ort able to help me. I also have been unable. I called 8 major New York hosptials. none have an autonomic dysfunc tion department. nearest one my doctor knows of is in Memphis.
I am now confined to an ambulance for long trips and am forced to wear a neck brace indfefintely. i am 49. I have been quite a mess for 2 years now. icannot sdo anything. I am confined to 'rest" and ambiulance to go out. not a good situation.
let me know if you have any suggestion...I am very confused about the 'pressure " headache (feels like someone is pressing on my head rather than a migraine or typical headache. It is also possible scar tissue fro mthe surgery ids 'blocking' the proper flow of spinal fluid and when I sit up (chanr positions the strain on my neck is causing a headache...but there is no 'fix' to that. they cannot SEE scar tissue on ANY type of test. I was Told they can hardly get needles into my neckl for pain injections. The surgeon recontructed EVERY disc level with rods, screws, and metal plates AND rebuolt a portion of the ligaments with a support rod. I was told PREVIOUSLY my neck was NOT as bad as I felt. Thety were wrong..when the surgeon got inside...what her thought would be a 4 hour procerdure tourned into 9 hours..every disc level was herniated and in a state of complete collapse. This was my third cervical surgery. the original siurgeon did NOT use a Disc artifact to stabiilze when he removed the firts herniated disc leading to all the other discs herniating over time. (No I could not file any legal damages against him because it took LONGER than 2 years for them to figure out he should have stabiulized the neck with a gel disc replacement rtather than let one side autofuse leav ing the neck in a stateod constant stress. So since 1992 I have been disabled.
let me know if you can come up with anything...I have already been through EVERY pain treatment possible before the surgeon did this third surgery and STILL go to pain management...they told me "we do not think in your condition your pain is going to improve, we are just trying to keep you from getting worse". I dont anticipate a recovery, I aam just trying to find a wa yto stabilize the autonomic heart problem and to find a CAUSE to the pressure headache,.
thank you.
David
Have they told you that your autonomic dysfunction has been caused by your operation? Would this be the surgery itself or through the aneasetic (spelling!)? Did you rsymptoms come on immediately after surgery? I ask this as POTS can be triggered by several things one of these being surgery.
If you have headaches and a rapid heart rate would caffeine not increase them? I am not sure of the reason behind this recommendation. What reason have they told you to take these pills?
There is a doctor in New York who understands autonomic dysfunction very well and he is also a POTS patient himself. His name is Dr. Charles Randy Thompson. I am not sure were he is located but if you are interested I could find out for you.
Although, a research centre would probably be a great place to be investigated. The journey is long though and I totally understand your concerns.
What is your resting pulse? Does it only increase on standing, walking etc?
Sorry for all the questions I am just trying to get a clearer picture of what yoiu are going through.
If you have headaches and a rapid heart rate would caffeine not increase them? I am not sure of the reason behind this recommendation. What reason have they told you to take these pills?
There is a doctor in New York who understands autonomic dysfunction very well and he is also a POTS patient himself. His name is Dr. Charles Randy Thompson. I am not sure were he is located but if you are interested I could find out for you.
Although, a research centre would probably be a great place to be investigated. The journey is long though and I totally understand your concerns.
What is your resting pulse? Does it only increase on standing, walking etc?
Sorry for all the questions I am just trying to get a clearer picture of what yoiu are going through.
PS My tilt table DID show orthostatic Hypotension but 'barely" o nthe tilt table...but I was at complete rest the night before...my symptoms are agitated by stress, standing fro am sitting or laying position and by ANY acticity. <MY heart is functioning..it is autonomic dysfunction that sends signals that overload my heart with false signals of stress so my pulse stays rapid without medication.....they told me to take caffeine pills but that is a temporary solutio nand it is not a good idea to constantly take a stimulant all day like caffeine. It will cause other problems being a diuretic (kidney problems, sleeping problems, prostate problems). So i ma not going to takw caffeine pills all day
hello
Thank you for your reply. Your response has more information in it than the "interns" i get to see at the hospital here in NY. Although the cardiologist spent a good deal of time with me--he was inexperienced with what to do with someone with an autonomic dysfunction and what medicatio to try. I have already been examined by one of the very few neurologists in NY who actually can rexognize autonomic problems (he used to treat President Nixon) and he said ..the autonomic nerves if traumized (which they were) can cause problems with many areas including causing cardiac orthostatic hypotension. With mine it also drastrically affects my PULSE so when i have ANY stress (walking a few blocks, etc) my pulse goes crazy (HIGH over 140 BPM) so they are trying to finda drug to help keep it stable.
It is a complex problem....it was causede by my having a 9 hour spinal cvervical (neck) reconstruction which caused trauma to my suystem because I was 'under" for 9 hours a few hours longer than the surgeon anticpated,. (He found more damage inside than he anticipated).
I will ask my cardiologist about the drugs you suggest since he had no idea what to do and I cant afford to keep seeing doctors at this rate....
THANK YOU
David
IPS-if they cannot regulate me soon--they are planning to send me to the nmearest autonomic research center which is 1,000 miles away and since I cant dfly with a leak in my Spina lfluid..i would have to have an ambulance take me down...soudns like an ordeal...
Thank you for your reply. Your response has more information in it than the "interns" i get to see at the hospital here in NY. Although the cardiologist spent a good deal of time with me--he was inexperienced with what to do with someone with an autonomic dysfunction and what medicatio to try. I have already been examined by one of the very few neurologists in NY who actually can rexognize autonomic problems (he used to treat President Nixon) and he said ..the autonomic nerves if traumized (which they were) can cause problems with many areas including causing cardiac orthostatic hypotension. With mine it also drastrically affects my PULSE so when i have ANY stress (walking a few blocks, etc) my pulse goes crazy (HIGH over 140 BPM) so they are trying to finda drug to help keep it stable.
It is a complex problem....it was causede by my having a 9 hour spinal cvervical (neck) reconstruction which caused trauma to my suystem because I was 'under" for 9 hours a few hours longer than the surgeon anticpated,. (He found more damage inside than he anticipated).
I will ask my cardiologist about the drugs you suggest since he had no idea what to do and I cant afford to keep seeing doctors at this rate....
THANK YOU
David
IPS-if they cannot regulate me soon--they are planning to send me to the nmearest autonomic research center which is 1,000 miles away and since I cant dfly with a leak in my Spina lfluid..i would have to have an ambulance take me down...soudns like an ordeal...
What happened to your heart rate during your Tilt Table Test. If it increased by 30bpm or went to 120bpm or over then a POTS diagnosis is made.
For Orthostatic Hypotension their are other things they can try you with. A high fluid intake along with an increased salt intake are natural ways of helping to prevent a drop in bp. Compression stockings are also really helpful for lots of people. Other medications they could try you on Midodrine or Pyridostigmine.
I was unable to sit up for several months and am now limited to the length of time I can be on my feet. What stops you being upright? What symptoms do you get or which one's worsen?
You say you were on Inderal (Propranalol) - was this to control your heart rate? This is also used to treat high blood pressure so this was definately not a good betablocker for you if you suffer with bp drops. There are other betablockers they could try you on. I was on bisoprolol. I was also on fludrocortisone and this made me dizzier really, I am off it now for a while.
If they have been treating you with betablockers and fludrocortisone it does sound like you have a form of dysautonomia - possibly POTS. Do you have the results of your Tilt Table Test?
I was in hospital for nearly 2 months severley sick and they could not find out what was causing this. POTS is rare and not many doctors know about it, so a diagnosis is often hard and takes many people years.
Visit these health pages and have a read through, see if they help you:
http://www.medhelp.org/health_pages/Neurological-Disorders/list?cid=196
Also, have a look at our community forum and post on here your situation and members will help you if they can and the community leaders will be able to point you in the right direction for a doctor hopefully in your area.
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266
For Orthostatic Hypotension their are other things they can try you with. A high fluid intake along with an increased salt intake are natural ways of helping to prevent a drop in bp. Compression stockings are also really helpful for lots of people. Other medications they could try you on Midodrine or Pyridostigmine.
I was unable to sit up for several months and am now limited to the length of time I can be on my feet. What stops you being upright? What symptoms do you get or which one's worsen?
You say you were on Inderal (Propranalol) - was this to control your heart rate? This is also used to treat high blood pressure so this was definately not a good betablocker for you if you suffer with bp drops. There are other betablockers they could try you on. I was on bisoprolol. I was also on fludrocortisone and this made me dizzier really, I am off it now for a while.
If they have been treating you with betablockers and fludrocortisone it does sound like you have a form of dysautonomia - possibly POTS. Do you have the results of your Tilt Table Test?
I was in hospital for nearly 2 months severley sick and they could not find out what was causing this. POTS is rare and not many doctors know about it, so a diagnosis is often hard and takes many people years.
Visit these health pages and have a read through, see if they help you:
http://www.medhelp.org/health_pages/Neurological-Disorders/list?cid=196
Also, have a look at our community forum and post on here your situation and members will help you if they can and the community leaders will be able to point you in the right direction for a doctor hopefully in your area.
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266
Hello
Than kyou for your reply.
I had extenisive allergy testing 2 years ago
they found I am allergic to NOTHING
in a wide panel test.
i am allergic to medications
and DYES (Gallilidium, Iodine)
SUlfites, sulfa,
bnut not any foods or allergens.
Also none of that would cause a LOW anion Gap...
that has medical causes.
I do not belevie in Holistic medicine
and YES I have tried it.
never cured or helped ANY symptom I have.
I do beelive CANDIDA plays a part.
I asked for DIFLUCAN but doctor said
my liver is taxed enough with the
medications I alreadt take.
What is the nbest way to get rid of
Candida without medication?
I do be,leive in REIKI healing
but I no longer have access to the person
who was legitimate..I cant randomly
look for one...I cant travel far
I haver to wear a neck brace and may
have a spinal leak
Than kyou
David
Than kyou for your reply.
I had extenisive allergy testing 2 years ago
they found I am allergic to NOTHING
in a wide panel test.
i am allergic to medications
and DYES (Gallilidium, Iodine)
SUlfites, sulfa,
bnut not any foods or allergens.
Also none of that would cause a LOW anion Gap...
that has medical causes.
I do not belevie in Holistic medicine
and YES I have tried it.
never cured or helped ANY symptom I have.
I do beelive CANDIDA plays a part.
I asked for DIFLUCAN but doctor said
my liver is taxed enough with the
medications I alreadt take.
What is the nbest way to get rid of
Candida without medication?
I do be,leive in REIKI healing
but I no longer have access to the person
who was legitimate..I cant randomly
look for one...I cant travel far
I haver to wear a neck brace and may
have a spinal leak
Than kyou
David
Hello
What specific tests would you do i an differential.
I havbe had several and they all have the asme results.
I need specific things tested that are NOT part
of a routine differential. I have low Anion gap,
that can have a number of serious causes.
I have low CD 4 cells (NO HIV) a long time.
Low testosterone (not responding
to testosterone gels), low lyphoctyes.
I am wondering about MS, (I have
a spinal headache and have had
3 major cervical surgeries)
or a parasite (No I did not
leave the country) in the
system. i AM LAOS PRODUCING
kidney stones...they do not
know why, Had 24 hour urine
many abnormalities, placed
of potassium citrate..not helping.
David
What specific tests would you do i an differential.
I havbe had several and they all have the asme results.
I need specific things tested that are NOT part
of a routine differential. I have low Anion gap,
that can have a number of serious causes.
I have low CD 4 cells (NO HIV) a long time.
Low testosterone (not responding
to testosterone gels), low lyphoctyes.
I am wondering about MS, (I have
a spinal headache and have had
3 major cervical surgeries)
or a parasite (No I did not
leave the country) in the
system. i AM LAOS PRODUCING
kidney stones...they do not
know why, Had 24 hour urine
many abnormalities, placed
of potassium citrate..not helping.
David
Hello
No I have not been tested for POT.
I annot find a hospital in ne York that DOES
this test.
My doctor wants to send me to MEMPHIS
by ambulance...sicne I cant situ p long
because I have a spinal headache....
(They cant find a "leak" but it
may be intermittant or not
a leak but a narrowing of the way
spinal fluid flows because I had
a 9 hour spinal recontruction
and then I was 'dropped" about 2 feet
by careless drivers...might have caused
a TINY spinal leak
In any case--I do not know a hopsital
that does a POT test--sounds like
that may help me.
I appreciate your reply
DAVID
PS--OH you mean a TILT TABLE TEST
yes--I had that=--the test was POSITIVE
my BP changed when they moved me from laying down
to upright. I HAVE orthostatic Hypotension now.
Unfortuanately---they first tried
INDERAL (beta vblocker) and it
lowered my BP so much I was
hopsitalized--it dropped to 66/28
Next they tried Fludrocortisone.
That over a few months caused
a 'constant" headache and I had
to be tested for temporal arteritris.
Now the doctor said
"take caffeine ;pills"
\but I am allergic to caffeine
(heart races)
so now they have no idea what drug to try.
I need adfditional surgery
and if my heart/BP is not under
control (regulated) when I have
anesthesia for hours--ut will
be dangerous.......trauma
does not do this problem much good
Any ideas?
No I have not been tested for POT.
I annot find a hospital in ne York that DOES
this test.
My doctor wants to send me to MEMPHIS
by ambulance...sicne I cant situ p long
because I have a spinal headache....
(They cant find a "leak" but it
may be intermittant or not
a leak but a narrowing of the way
spinal fluid flows because I had
a 9 hour spinal recontruction
and then I was 'dropped" about 2 feet
by careless drivers...might have caused
a TINY spinal leak
In any case--I do not know a hopsital
that does a POT test--sounds like
that may help me.
I appreciate your reply
DAVID
PS--OH you mean a TILT TABLE TEST
yes--I had that=--the test was POSITIVE
my BP changed when they moved me from laying down
to upright. I HAVE orthostatic Hypotension now.
Unfortuanately---they first tried
INDERAL (beta vblocker) and it
lowered my BP so much I was
hopsitalized--it dropped to 66/28
Next they tried Fludrocortisone.
That over a few months caused
a 'constant" headache and I had
to be tested for temporal arteritris.
Now the doctor said
"take caffeine ;pills"
\but I am allergic to caffeine
(heart races)
so now they have no idea what drug to try.
I need adfditional surgery
and if my heart/BP is not under
control (regulated) when I have
anesthesia for hours--ut will
be dangerous.......trauma
does not do this problem much good
Any ideas?
Hi, You mention autonomic dysfunction. Changes in bp and pulse. Have you ever been tested for Postural Orthostatic Tachycardia Syndrome (POTS). Please have a look on the Dysautonomia (autonomic dysfunction) forum here and check out there health pages. POTS has a wide and varying symptom list differing person to person and on a daily basis. Diagnosis is through a tilt table test.
Also...keep in mind that being allergic and intolerant are two very different things. Conventional testing does not pick up the majority of sensitivities.
Hi!
You may be allergic to something, or things. Have you had basic allergy testing done? Seems like you have had many conventional tests done. I would see a certified holistic practitioner that may be able to find the cause instead of treating the symptoms. Sounds like you need to have them find your weak nutritional spots, and dose you with mega vitamins, not medication which could be making this worse. Sometimes an imbalance of Candida can become systematic creating all these symptoms you have listed. ( which is what causes yeast infections in men and women) abstain from concentrated sugars, alcohol, fermented foods, bread and caffeine. See if that works. Stick to non allergic foods for about three weeks (rice, legumes, green veggies and low fat protein foods) You may have severe reactions. Avoid chemicals in food too. Examples are MSG (a food flavor enhancer) and artificial sweeteners. Keep us updated. I'm 99% sure you will see results.
You may be allergic to something, or things. Have you had basic allergy testing done? Seems like you have had many conventional tests done. I would see a certified holistic practitioner that may be able to find the cause instead of treating the symptoms. Sounds like you need to have them find your weak nutritional spots, and dose you with mega vitamins, not medication which could be making this worse. Sometimes an imbalance of Candida can become systematic creating all these symptoms you have listed. ( which is what causes yeast infections in men and women) abstain from concentrated sugars, alcohol, fermented foods, bread and caffeine. See if that works. Stick to non allergic foods for about three weeks (rice, legumes, green veggies and low fat protein foods) You may have severe reactions. Avoid chemicals in food too. Examples are MSG (a food flavor enhancer) and artificial sweeteners. Keep us updated. I'm 99% sure you will see results.
MEDICAL PROFESSIONAL
Hi,
How are you? I know it is hard to be in the dark but patience is very important right now. Another differential I could think of is immunological causes. Additional tests may need to be done to rule this out. I also recommend that you have consultation at a local training hospital. The doctors there are exposed to a lot of undiagnosed conditions and may help. Take care and do keep us posted.
How are you? I know it is hard to be in the dark but patience is very important right now. Another differential I could think of is immunological causes. Additional tests may need to be done to rule this out. I also recommend that you have consultation at a local training hospital. The doctors there are exposed to a lot of undiagnosed conditions and may help. Take care and do keep us posted.
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