things that you have been unofficially dx'd with
 

this'll be fun

for me:

rheumatoid arthritis
hypochondriac
double jointed
whiplash injury/straight neck..foreward head posture blah blah
tmj
ehlers danlos
winged scaps
flat feet
knock knees
hypermobile hips
scoliosis
elevated ribs

Hehehe
 

:rolleyes:

Cubital tunnel syndrome
100% subluxed ulnar nerve (both arms)
allergic reaction to lotion (when hand/arm turns red)
vasospasms
RA
Raynaud's phenomenon
and the "everything is fine- you're almost 22, 23, 24, 25, and will soon be 26 years old. You're healthy!!"

HA :hug:

hahah yup im 27

Bilateral MEGA PAIN started in January 2007:
Carpal Tunnel (had surgery on both sides)
epicondilitis
shoulder tendonitis
bursitis
fibromyalgia
mechanical over-usage
rotator cuff tears
wegeners granulamatosis (after false positive blood testing)

most people I know probably think or thought I was faking, or embellishing (especially since all the doctors here kept diagnosing me with different things, and all my mri-xrays-ct, etc showed nothing abnormal)...but I knew all along that I had TOS.

After 4+ years of chronic pain (felt like killing myself often), I decided that I was right about TOS, and just needed to find the right specialist. This proved very difficult in Canada...so I took a trip to St-Louis, got diagnosed with classic textbook "Neurogenic Thoracic Outlet Syndrome" bilaterally. I met with Dr. Robert Thompson, who was very calm, patient, insightful, and competent. He is also head of the TOS society in the United States.

I had bilateral pectoralis minor tenotomy a week later. Dr. Thompson is hopeful that this surgery, along with the physiotherapy treatment following it will help us avoid having the larger surgeries done. I am hopeful, and trying to stay positive. It's hard some days, or some points in a day. I am almost 4 weeks post up, and almost all my swelling is gone, the surgical pain is about 70% gone, but I have a lot of my pre-surgery pain, and more! My PT says it is normal (internal swelling and scar tissue) and that I will only see results starting in a few months.

I hate living with TOS, it's a nightmare that no one can understand unless they have it. Just typing this reply has kicked the crap out of me.

Good Luck my fellow TOSers

things I've been DX with
 

De Quervains stenosis tenosynvotis (had surgical release both sides)

True Neurogenic TOS bilaterally

Vascular TOS Bilaterally had surgery. RT rib removal and scalene muscle

CRPS or RSD

Fibromyalgia

Depression (LOL) not clincally depressed. Just hated and distrustful of DRs at this time.

Hypertension

Totally lost natural curve in neck and lower back.

Kyphosis

Nerve blocks do not work

Take NOTHING for pain.

Use soundscapes and mind over body for pain control


MOST RECENTLY DX: winging RT and LT SCAPULA

Asthma
Tracheitis
Acid Reflux
B12 Deficient - take a little supplement and you will be cured
Lymphoma
AIDS
Cat Scratch Fever
Mysterious Infectious Disease
Lyme
Salivary Gland Infection
Salivary Stone
Peripheral Neuralgia
Laryngeal Neuralgia

Easily add mental case. No one said it, but it was implied.

:rolleyes:
:D

Yea, we have all heard it all havent we. Even after they dignos us, we still get other "opinions" seems the ones that know the least have the biggest mouths.

cheers,
Jay

bilateral tendinitis
bilateral wrist strain
epicondylitis
De Quervain's
loss of proper curves of spine
shoulder strains
neck sprains
chronic soft tissue damage
cervico-thoracic spine strain with arm pain
hyper-mobile tendencies
hypertrophic neck muscles
uneven shoulders, hips, and rib cage

I think that's most of them.

Best of luck to you! I have to ask what is the TOS society of the U.S.?

how long have u got
 

sleepwalking
insomnia
restless legs
restless arms
concussion
measles
german measles
mumps
chicken pox
progressive myopia
branching arterial retinal occlusion
tos
carpal tunnel
cubital tunnel
whiplash
osteopenia
rotated pelvis
schmorl's node
torn labrum
bakers cyst
obeseity
hypertension
meibomitis
blepharitis
thyroid cancer
endometriosis
gall bladder disease
crs
old timers
epilepsy
pnes
doctorphobia
depression
anxiety
chiggers
poison ivy
jock itch
fleas
ticks
too short
too stiff
neck not curved
scoliosis
tmj
not 27 anymore

Dr. Thompson is part of the TOS consortium who along with CORE physicians and professionals are collaborating on a TOS book for medical and professional training/refernce along with piggy backing a patient hand book. It is in phase; editing
By all who have contributed.

http://surgery.wustl.edu/TOS_Consortium.aspx

From what I can tell looking at this it is a self appointed position. The "surgeons" mentioned are all very pro surgery for treating all types of tos. This is not just my opinion, but fact. I would like to see the same type of consortium set up by people who treat tos non surgically, not set up by surgeons....and yes, I did see all the other names mentioned in the list. But wouldnt it be nice if tos was looked at outside of the box, with new ideas for treatement.
Just my thoughts.....I still hate the idea of taking out these ribs that cant be put back.
Cheers,
Jay

I'm withyou Jay. I even want my appendix back. I did learn God put it there for a reason too...

my good dr. Atasoy is on that planning/steering committee.

I'm very interested in this project of collaboration amongst these fine physicians and surgeons.

It is definitely a start.

More books to follow i'm sure.

We need more options and a cure.

Interesting
 

But too many surgeons on there for me, Been that route won't go there again.
I have to agree with Brokenwings I want my gallbladder back, along with my rt first rib and scalene muscle. Lots of suffering for nothing. Surgery is not an option for neurogenic Tos in my opionion at least not in my case.
The surgeon that did my surgery is on that list scares me I was treated like a naughty girl.


Andismom

lol - good thread
 

hysteria
Cat Scratch Fever
cancer
carpal tunnel
ulnar entrapment
migraines
:mad:
I get hysterical is when I'm mis-diagnosed with scary things like cancer. That was the only time I ever saw my Dad cry.