[ConfusedpossibleTOS]

Hello all;
Thanks for having this site...
My story sound pretty similar i'm sure
I believe everything started when I my first child which I might add was 10 1/2 pounds natural, or when had a car accident? During my pregnancy first and second I would pass out. To make a long story shorted I have had chronic pain neck,arms,tingling,numbness,heaviness,shoulders,ba ck,chest. With extreme weakness bilateral but most on left side. My blood pressure now is around 20 off on left side. Subclavian is believed to be the problem? But now say possible TOs, I do have Mitral regurg and diastolic dysfunction as well as neurogenic syncope. I get really bad chest pain that mimicks a heart attack. I get sob , diaphoretic and my heart rate drops
to where i am about to pass out.
I have proven Tilt test
failed Cardiac stress test
neg cardiac cath
stenosis in disks T area (not sure don't have results now)MRI 2012-in back and athritis
bulging disks in neck 2012
urinary incontinence
Possibe dysautonomia & Orthostatic intolerance
Fibro
slight asthma? Although get very short of breath
Heat intolerance
Flushing face
Swelling in ankles
and neck get s real puffy and can leave fingerprints if touched

Basically a mess

On blood pressure med & for small vessel disease
my treatment is complicated due to the fact of the blood pressure differences

Does anyone on here also have the syncopal episodes, extreme chest pain and blood pressure difference???

Thanks for any help.....

[Jomar]

Originally Posted by ConfusedpossibleTOS

Hello all;
Thanks for having this site...
My story sound pretty similar i'm sure
I believe everything started when I my first child which I might add was 10 1/2 pounds natural, or when had a car accident? During my pregnancy first and second I would pass out. To make a long story shorted I have had chronic pain neck,arms,tingling,numbness,heaviness,shoulders,ba ck,chest. With extreme weakness bilateral but most on left side. My blood pressure now is around 20 off on left side. Subclavian is believed to be the problem? But now say possible TOs, I do have Mitral regurg and diastolic dysfunction as well as neurogenic syncope. I get really bad chest pain that mimicks a heart attack. I get sob , diaphoretic and my heart rate drops
to where i am about to pass out.
I have proven Tilt test
failed Cardiac stress test
neg cardiac cath
stenosis in disks T area (not sure don't have results now)MRI 2012-in back and athritis
bulging disks in neck 2012
urinary incontinence
Possibe dysautonomia & Orthostatic intolerance
Fibro
slight asthma? Although get very short of breath
Heat intolerance
Flushing face
Swelling in ankles
and neck get s real puffy and can leave fingerprints if touched

Basically a mess

On blood pressure med & for small vessel disease
my treatment is complicated due to the fact of the blood pressure differences

Does anyone on here also have the syncopal episodes, extreme chest pain and blood pressure difference???

Thanks for any help.....

Hello,
It sounds like you have a few things going on.

Has Dr mentioned getting a new MRI to check the stenosis & bulges?
Often the best way to find out if it is TOS , is to get all other possibilities ruled out.

The failed cardiac test and the spine factors need to be looked at more regarding a yes or no on TOS.

Usually for most with TOS, the heart /cardio tests out as OK, because it is the muscle spasms creating the problems & symptoms , not the actual heart..

You can read more on our TOS forum, you'll find a few posts where some did go to ER thinking it was HA , but it was not, in their case. all was fine.

I almost thought I was having HA for a short time at my worst sx, but it was the inter coastal muscles in my ribs, they were in severe spasm as well as nearly my whole upper body at the time...

http://neurotalk.psychcentral.com/forum24.html
check the sticky threads too.

[ConfusedpossibleTOS]

[QUOTE=Jo*mar;1169163]Hello,
It sounds like you have a few things going on.

Has Dr mentioned getting a new MRI to check the stenosis & bulges?
Often the best way to find out if it is TOS , is to get all other possibilities ruled out.

The failed cardiac test and the spine factors need to be looked at more regarding a yes or no on TOS.

Usually for most with TOS, the heart /cardio tests out as OK, because it is the muscle spasms creating the problems & symptoms , not the actual heart..

You can read more on our TOS forum, you'll find a few posts where some did go to ER thinking it was HA , but it was not, in their case. all was fine.

I almost thought I was having HA for a short time at my worst sx, but it was the inter coastal muscles in my ribs, they were in severe spasm as well as nearly my whole upper body at the time...



Thank you for your response
Just trying to get everything figured out is so frustrating..
Yes I do have some heart issues, but they don't feel that is whats causing the pain. I was supposed to get another stress test done, ins denied. I see another cardio Wed to see if TOS or if i need a pacemaker. Most likely Subclavian steel as well because of the major difference in pressure. Is Near syncopal episodes associated with TOS at all?? I also at times can not move my head either direction without getting symptoms. Mine is def bilateral and the pain is torture and weakness is torture everyday. Forgot to mention also have moderate sleep apnea which i can not tolerate cpap. Could that be because of TOS and not being able to breath properly? Just so many questions.... Just need to get this all out!! I get shoved from doc to doc, just need it to stop. Have had a neuro suggest physicological, just did brain scan and that was good, referred to a vertigo specialist but didnt go dont believe it is vertigo because of the blood pressure issue and the fact that if you raise the arms my pulse pretty much dissapears. Love to read everyones post to see how came to get diagnosed, and just to witness the support. If it isnt TOS at least im in right direction and can get this all out, before builds up and become depressed, which i have had severe in past.
Thanks again!!

[Jomar]

Have you been to any advanced PT for the pain and a posture/pain evaluation?
Often PTs will do a more in-depth hands on assessment than drs.

If you are having spasms or trigger points , some really good PT with perhaps heat, ultrasound, massage/ manual trigger point work, IF stim should be help to relive some of the pain. Possibly a top rib is raised up also, a rib mobilization can be tried.

Do not let then force you to lift weights or use hand bike or other things that will exacerbate your pain /symptoms.

[ConfusedpossibleTOS]

Originally Posted by Jo*mar

Have you been to any advanced PT for the pain and a posture/pain evaluation?
Often PTs will do a more in-depth hands on assessment than drs.

If you are having spasms or trigger points , some really good PT with perhaps heat, ultrasound, massage/ manual trigger point work, IF stim should be help to relive some of the pain. Possibly a top rib is raised up also, a rib mobilization can be tried.

Do not let then force you to lift weights or use hand bike or other things that will exacerbate your pain /symptoms.

Yes I have been through PT For back,neck and darn if i can think of it right now but the thing with the foot thats extemly painful, had special insoles made. Tried tens unit on neck which tensed me more. Stopped going went through a bad depression after attempts at different meds, but they never once mentioned TOS at the time a possiblitlity. It just progressed so bad its debilitating, I still work full time a computer job but it is becoming more and more a challenge. Just need answers quick , feel as though my life is on hold. Missing out on so much. Currently only on the blood pressure meds and small vessel disease med to try. But if something not done soon will be on pain med. Just trying to stay a float.
Like alot of you for sure.
Don't know if this is what is happening, but its a step closer.

Thanks again

[Jomar]

I will say that I had the best & fastest improvements with a very good /multi talented chiropractor.

He used all the passive modalities - ultrasound, IF stim, low level laser, NIMMO/trigger point/deep tissue, etc and rib mobs, as well as very gentle adjusting..
and he also did the c1 c2 adjustments.

His adjustments helped get my posture back into shape too.
I had severe spasms when I first came across him @ a fair of all things.
He came over and asked if I was in pain, I guess it showed LOL..
He really did help to resolve the spasms and just overall so much better than most of the avg PTs you find.. I did have 2 adv PT , one was a teacher of PT , and had his own clinic . He was the one to try the rib mob that was such instant relief for me..
Then I told chiro & he started doing them as needed..

General PT would have taken forever to accomplish that , I had been in PT for many sets of sessions with all my RSIs and shoulder strains, and the symptoms always returned... after back on the job a few months..
did you find the TOS sticky threads- here a re some -
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread84.html

Feel free to make a thread on the TOS forum , many members don't explore outside of their main topic.. so they may not be seeing your posts here on the new members forum. http://neurotalk.psychcentral.com/forum24.html

You can copy/paste from your posts here so no need to retype.
http://neurotalk.psychcentral.com/forum24.html

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene