You may get diagnosis and treatment within weeks of reading this. However, if insurance is a hurdle and takes time, keep these (non-verified, my own ideas) in mind:
Listen to your body and start recording your activities, sleep patterns, food - and what happens when you do these things. You might notice a pattern (deprived sleep gives you more pain, certain foods are stimulants, etc.). This will help make the case with your physician for diagnostics.
Your doctor may not know about this. Don't be sore with her/him. It is new. Bring links and a summary of what CCSVI is so they can do research and give you a referral.
In CPR class I learned that drinking 8 oz of water can raise or lower your body temperature up to 3 degrees. Since temperature regulation problems is one of the symptoms of CCSVI, drinking water can help cool you when you're hot, and warm you when you're cool. It can be used in emergency situations for hypothermia and heat stroke if the victim is awake.
Keep aspirin with you. This is a default method that thins blood. My dad takes one aspirin every day to keep blood flowing properly. Other cholesterol meds are good idea, too, if you have plaque build-up in arteries. I'm assuming it will help veins as well.
Stop or slow down smoking. Smoking creates circulation issues and increases free radicals.
All of the suggestions the public is given on diet and exercise are a good idea if you can handle it. Move at a moderate pace but fairly consistently. Take up that activity you used to love (unless head-butt soccer balls). Yes, this entry is for you, Kel. As for diet, my PCP, Dr. Savage, suggested the Paleo Diet. Basically, fish and greens like our ancestors ate. I have been trying this for a few days. My numbness is still here, but reflux issues subsiding dramatically.
Try natural approaches to dealing with this first, like diet and atlas adjustments. If anything it can buy you time. I did yoga at times I was allowed (by the chiropractor). This increases circulation, blood pressure (in a good way), stress reduction, flexibility, strength, digestion, and reduces toxins. My atlas chiropractor is: www.borerchiro.com. I chose them because they have done more than 60,000 adjustments and really work to understand your issues. Many symptoms related to the accident and not related to the accident improved. My sinus issues improved by about 80% and TMJ improved (in conjunction with orthodontic care). I can testify it works because when I skip a visit I am hunched up until I get there. I also went to yogahealth.org with LeeAnn. LeeAnn is a firecracker! What a positive and loving force, only eclipsed by my own parents, grannies, and my back-up parental figures (you know who you are).
Talk to other people about your issue. Spread the burden and the joy of hope.
Question the prescription meds you're taking. Just covering up symptoms is not enough. Figure out if there is a more permanent way to take care of your issues.
Lobby for more research, diagnostics, and treatment centers in the US. Lobby for federal funding for research and facilities as well. Call your insurance companies every day if you have to. Contact your HR person and try to evangelize her to your cause and situation. Maybe she has some cards up her sleeve or a few favors to call in.
Keep following the new research and applications. At first Dr. Zamboni said reduced-size veins were only in MS patients. He has since recanted that statement because they are found in people with other issues.
Ask yourself this: How might my circulation be harming me? If you can identify a path of destruction, CCSVI is worth investigating.
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