I think that's enough exercise for this week northerngirl!

ROFL.

tooo funnnnnny!!!!!!

I hope you're okay.

.....

Oh no, I should have explained more about it so sorry

Maybe you should start on the floor with arms out at a comfortable angle {for you} and progress from there first before you try the murder ball again.

Sharon Butler really likes to stress baby steps when doing her stretches { i think it should apply to all stretches/PT for us}
I know it's very easy to go overboard... but that will set you back in the healing process.

You story made me chuckle though, I just hope you don't have any bad after effects from it.

No I am great, I am feeling like being motivated and am still giggling. I feel a little stiff but it's a good thing. I must tackle the ball again! I will not let it win!
Cheers Laurie

I tried to get in to see my last Dr. (I liked her). Between me being gone for a week and her been gone, it looks like the end of next month. I guess I'll go back to my neigbor (ugh) and listen to him talk and not really listen. I hope this is TOS, I have that black hole feeling again today that it's ALS.

Hi,

okay NO more weight lifting! No overhead stuff...or falling off the ball onto head stuff!!!! What a time you had !!LOL

Any stretching I do, I do in the shower when my muscles are more loose...not sure how long you get to do your shower with your kids(not sure on age) .....however I find after 10mins I am ready to do simple stretching of my neck and shoulders as well as simple arm lifting as well as walk the hands up the wall exercise...not to the point of pain but to the point of feeling like I 'could' go further but really shouldn't.

As for washing my hair...past shoulder length I bend over and do it. I am not putting my arms overhead. I find this has been my saving grace.....and as for drying my long locks.....bend over with hairdryer and scrunch my curly hair...holding dry has become too much of late and I just purchased the dryer stand. yet to use it.... I have also purchased Conair's new straightening dryer with the tourmaline and comb on the dryer itself. I turn upside down again...and use it. it took only 15 mins to straighten my hair so it was a success as it usually takes 30mins to dry with brush and dryer straightening then straightening iron to finish.....oh I think sometimes super short would be easier...but wedding in a year not getting it cut.

I am a heat addict. I keep my house at 76 as it is too cold otherwise and I may have a sweater on at 76 still can be cold. I have an amazing heating pad (2 actually so I don't have to drag them around the house) by sunbeam. It's a pad you unhook from plug in device and you can throw in washer.....heating elements in the pad don't get damaged....mind you I have yet to wash mine...they usually die before I need to wash them.....make sure there is a timer on the one you get if you plan on getting on. it's much safer that way. below link of the pad.....

http://www.sunbeam.com/ProductDetail...-home&pid=1000

Exercise is great but is best decided by a PT if you have one close to you to help you decide what you can and can't do. It will really help you. You may also help with diagnosis with a PT as they sometimes notice what the actual problem is before the doctors clue in......

You are not crazy you are just in pain and frustrated!!!!!!!!!!! WE GET IT!!
IF there is any place I feel safe and understood and un-judged at all times it is HERE!!!!

Is there a specific reason to see the doc who dosn't listen??? Make sure u go in to see him with some info on TOS
http://www.mayoclinic.com/health/tho...ndrome/DS00800
http://www.umm.edu/ency/article/001434sym.htm
http://www.atosa.org/tos-research-and-resources-library
many sites but make sure credible info or doc may not listen...ie from a major university or hospital group.
Have goals in mind for the appointment and write things down so you don't forget the questions you may have for him or things you may want to ask.

As for testing....the MRI's I have have been to RULE OUT other pathology and not to diagnose tos. As well as a basic chest X-ray.....will be helpful as it can show if you have cervical ribs which are extra ribs you may have that could be complicating things for you.
An EMG usually only shows MAJOR nerve damage. So not to be trusted to diagnose TOS. Any doctor who knows of ToS will know all this. However in your situation.....you may have to be the one guiding the visit. I have done this since nobody would listen to me or take me seriously until I changed doctors......I was at an idiot doc who told me go get a massage you'll feel fine....but he didn't explain any of my symptoms as to why I had them etc....I'm sure you get what I'm saying.

If you are going for pain control...then things like tramacet or tramadol work well for pain in the beginning...before you need to graduate up....LOL...and things like muscle relaxants....baclofen 10mg twice a day or flexaril 5-10mg three times a day....ideally make sure you have something at bedtime....you could even try robaxacet if he won't give you anything...OTC drug. Also celebrex an anti inflammatory is good for pain 100mg once or twice daily with food.
as for the weakness the only thing is rest!!!! take breaks between tasks...not easy with kids 8 and 6. (not that I'd know I've none, but I can imagine!!) Heat is your friend...or most of us anyhow....NOT if you have RSD which is a totally different evil all together. Your symptoms do not sound like RSD to me.

anyhow make sure you go prepared to the non listening doctor and MAKE him listen...grade your pain on a 0-10 pain scale....0 being none 10 the worst you could ever imagine in the world and you are curled up in a ball dying.......this may help him to understand your issues. Doctors (esp. old school ones) like data so start a diary if you can and then let him know what brings on your symptoms....what makes you feel a certain way and make sure you keep good records. It will also help YOU to understand this evil called TOS.

I hope tht some of this has helped you and you get some results from this doctor you are going to see. Look forward to hearing how you get on at the doctors....hopefully you get the results you need.

I know the medications not only because I have been on them but because I used to give them to my patients as a nurse.

take care
love and hugs,
Victoria

Thank you Victoria,
I have decided to wait to see the doctor I like. I can say to her "I think it could be TOS" she would say if she did not know let me find some more info or let's send you to someone who would know.

One hour drive and 3-4 week wait will be easyer, than trying to debate with someone who knows everthing. Actually he's not that bad. I just feel so unprogresive when I go to him. I think I just want to go see a neuroligest. I would like to know how to get better, or at least say where I am. Thanks again Victoria.

laurie

Haven't been on this site for a little while, but found your post right away. I can understand your frustration and wanted to share a little about what I've learned so far (stress the "little" part). I hope I won't bore you to death - a guess a few months off has made me want to vent a little too!

Several months ago, my milder symptoms (numbness, tingling, and aching in my arms - especially the left) led me to online research of possible causes. I came upon a website that showed 3 different tests for TOS. I failed (positive) all three. Mentioned it to my doctor and he laughed a little, until I showed it to him (the white hand test really gets 'em interested). He had never heard of TOS (definitely NOT the first doctor I've talked to in that situation), but sent me to a vascular surgeon for a consult.

The vascular doc knew about it and how to test for it, but admitted he didn't have much experience treating it. He did his office tests (with the same positive results) and ordered an angiogram to test for blood flow with the arm(s) in different positions. Even his assisting staff at the procedure were blown away when I raised my arm over my head; they had never seen anything like that before - that's when I really knew how little was known about it by the medical community. 100% arterial and venous occlusion with arm abduction.

That was 2 months ago. I realize you're in Canada, but let me assure you that being in the US with an HMO may be close to just as frustrating. My case file has been sent to 5 different offices and hospitals with every one of them refusing to consult with me (due to lack of knowledge, I assume). At least they have the where-with-all to admit it. In the meanwhile, my original vascular surgeon told me that NOT having surgery was out of the question because my type of TOS is arterial and venous, thus not doing surgery could result in a blood clot and/or stroke (I'm only 38 with 5 kids - not an option for me, of course!).

He made it sound so urgent, yet even now, I'm waiting for an appointment next Wednesday with a vascular surgeon at UCI that, as far as I can tell by his online bio, doesn't do a whole lot with this condition either. So, I'm pretty sure that will lead to ANOTHER referral on to somebody else. Hopefully, eventually, I will get the referral I really need to Dr. Ballard or Dr. Ahn, specialists in this area in Southern California.

In the meanwhile, the veins in my arms are starting to look like my 3 year old painted lines on me with a purple marker. My arms ache constantly and are numb and "asleep" at lower and lower angles. I wake up with swollen and numb lower arms/hands and simple tasks are becoming difficult.

I'm a rookie, relatively-speaking, at this TOS thing. I've been diagnosed with arterial and venous TOS, but have yet to be referred to a doctor willing to help me. Still, I have 2 suggestions for you:

1. Visit the website: http://www.vascularweb.org/patients/..._Syndrome.html
It talks about the different types of TOS in the simplest terms I've found - great to show to your significant other and/or family, if necessary - heck, or even your doctor!

2. Call Dr. Richard (or Robert?) Sanders in Colorado. He has written a book about TOS and has done a few thousand surgeries (although recommends more conservative remedies first (that's a plus!)). He is willing to do a detailed telephone consultation with you and give you suggestions on what you should do next. I have his number around here somewhere, but I'm sure one of this site's great guru's has it too. If you can't locate it, let me know and I'll find it for you. He's a great resource and is actively researching the condition, so he really wants to know about your symptoms, and considering ways to treat it - hopefully avoiding surgery!

This may have already been mentioned in previous replies to your post here, so pardon me, but try this easy test: Stand in front of a mirror. Raise both of your hands over your head, forming a sort of triangle shape with your thumbs and 1st fingers. Rock your shoulders back slightly so that they are in line with your chest (the flat plane of your body), as if you were trying to squeeze sideways through a very narrow opening in a doorway, etc.

If you're like me, you don't even have to "pump" your hands a few times before you start to feel numbness, aching, tingling, and heaviness - not to mention, your more-affected hand is completely white (sometimes blue) in comparison to the other. If you were to have someone check for your pulse at this time, they'd be hard-pressed to find it - a sure indication that the blood supply to (and possibly from) your arm is blocked, it not completely occluded.

Show this to your doctor - it will certainly raise some eyebrows! Tell them you'd like an ultrasound and/or angiogram to be sure of the extent of blockage. If you have only (and I say that VERY lightly) neurogenic symptoms (numbness, pain, tingling, heaviness, weakness, etc.), you may be able to avoid the NASTY surgery and recovery by learning ways to deal with the pain (which may be much better than the debilitating surgery to release the pressure on the nerves). But, if your biggest problem is vascular, that is occlusion of the subclavian artery and/or vein, there are fewer choices for treatment. Gee, for some reason, we just can't live (well, our limbs can't, anyway) without that darn blood supply.

I hope you are able to find some answers soon - and me too for that matter. So many things in my life are in limbo waiting to find out what the next year or two have in store for me. I just try to take one day at a time and not let my thoughts about it consume me. But, honestly, every day is a struggle - and I don't even know what's going to happen yet!

Hopefully, you will find the same understanding and support on this forum as I have. It's a great feeling to know that there are people out there that know what you're talking about and what you're feeling. It's NOT all in your head, your symptoms are real. Stand up for yourself and be your own best patient's advocate. The only person who will look out for you is YOU! You go girl!

Keep us informed. I'm thinking about you!
Carrie

Carrie . excellent post,
I hope they will put ASAP on your file and get you to one of those expert docs soon!
Keep at them.

Wow, Thank you, thank you! I so look forward to coming here to this site and get all this information. I am getting my power back I am going to get some answers. Thanks for the support.

Cheers Laurie