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For those of us willing to expose our actual selves to to the forum, here's a thread for the cancer, the colonoscopies, the genetic disorders, and everything in between.
For those who haven't been paying attention, I've been dealing with a crapload of neurological symptoms that we believe are mostly related to a heterozygous A1298C MTHFR mutation, although the worst of the symptoms I've been dealing with are not actually in the standard symptom list.
My most recent neurologist (he's the third local one I've seen, plus the two at OHSU) has given me a referral to the Mayo Clinic. If I'm lucky, they'll have a diagnosis and treatment regimen. If not... well, I'll need to apply for even more government assistance than I'm getting now.
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Mayo Clinic is good! They were very helpful for my Dad's situation.
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I'm A.G.E. positive.
It's a terminal condition.
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CS, I hope your doctors have you on the right track to regaining your health.
Were I to need some critical care, I would consider a facility such as Sunridge Medical. Especially if I had been diagnosed with cancer. http://www.sunridgemedical.com/
America's Premier Center for Alternative Treatment
Sunridge Medical Wellness Center
Sunridge is an alternative treatment center and immune recovery facility that offers advanced, research-based alternative medicines as supportive care to patients suffering from a wide variety of serious illness resulting from a compromise to the immune system such as: Cancer, Autoimmune diseases, Chronic Fatigue, Fibromyalgia, Chronic Infections, Lyme Disease, Lupus, Multiple Sclerosis and environmental toxicity.
Our physicians utilize scientific practices, naturopathic medicine, holistic alternative medicine, traditional medicine and also provide alternative treatments to bring your body back to functioning the way that it was meant to. With professional, competent and compassionate care for our patients, the entire staff at our alternative treatment clinic is committed to helping our patients reach their health goals safely using cutting-edge treatments backed by research and science.
An Alternative Treatment Center Could Be Right For You
Whether you have been diagnosed or misdiagnosed, whether you have been searching to get your life back to “normal” or you are just starting to feel your body is not working the way that it used to – there is help for you when you choose an alternative treatment clinic. At Sunridge Medical, we are specialists in providing an integrative approach to the treatment of chronic disease.
Proverbs 17:22 New Living Translation
A cheerful heart is good medicine, but a broken spirit saps a person's strength.
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Tornado... Sounds like an amazing place!
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(11-04-2013, 08:05 AM)Scrapper Wrote: Tornado... Sounds like an amazing place!
CS doesn't believe in any of that stuff though.
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(11-04-2013, 10:04 AM)orygunluvr Wrote: (11-04-2013, 08:05 AM)Scrapper Wrote: Tornado... Sounds like an amazing place!
CS doesn't believe in any of that stuff though.
I would ignore the scripture and concentrate on this:
Quote:Our physicians utilize scientific practices, naturopathic medicine, holistic alternative medicine, traditional medicine and also provide alternative treatments to bring your body back to functioning the way that it was meant to. With professional, competent and compassionate care for our patients, the entire staff at our alternative treatment clinic is committed to helping our patients reach their health goals safely using cutting-edge treatments backed by research and science.
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(11-04-2013, 10:24 AM)Scrapper Wrote: (11-04-2013, 10:04 AM)orygunluvr Wrote: (11-04-2013, 08:05 AM)Scrapper Wrote: Tornado... Sounds like an amazing place!
CS doesn't believe in any of that stuff though.
I would ignore the scripture and concentrate on this:
Quote:Our physicians utilize scientific practices, naturopathic medicine, holistic alternative medicine, traditional medicine and also provide alternative treatments to bring your body back to functioning the way that it was meant to. With professional, competent and compassionate care for our patients, the entire staff at our alternative treatment clinic is committed to helping our patients reach their health goals safely using cutting-edge treatments backed by research and science.
That's what I'm talking about. He doesn't believe in that stuff. BUT I can tell you first hand that if we had followed traditional medicine for boy he'd most likely be dead, and if not, severely debilitated. Even the people that ran the study program at Harvard said as much, that modern medicine could never come close to creating the successes for boy that he's had.
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(11-04-2013, 10:24 AM)Scrapper Wrote: (11-04-2013, 10:04 AM)orygunluvr Wrote: (11-04-2013, 08:05 AM)Scrapper Wrote: Tornado... Sounds like an amazing place!
CS doesn't believe in any of that stuff though.
I would ignore the scripture and concentrate on this:
Quote:Our physicians utilize scientific practices, naturopathic medicine, holistic alternative medicine, traditional medicine and also provide alternative treatments to bring your body back to functioning the way that it was meant to. With professional, competent and compassionate care for our patients, the entire staff at our alternative treatment clinic is committed to helping our patients reach their health goals safely using cutting-edge treatments backed by research and science.
Actually you would be better off to not ignore the scripture.
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There's a reason I put this thread in the Lounge, people.
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11-04-2013, 10:56 AM
(This post was last modified: 11-04-2013, 10:57 AM by PonderThis. Edited 1 time in total.)
(11-04-2013, 10:48 AM)Scar Wrote: Actually you would be better off to not ignore the scripture.
You can tell that because Christians are all so glowingly healthy and ancient.
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Now that I'm a bit more awake, I realized I gave the wrong diagnosis in my original post. It's homozygous A1298C MTHFR. Not heterozygous. My mother has heterozygous A1298C and C677T.
That means both copies of my MTHFR gene have a problem in the DNA strand at position 1298, where what is supposed to be Adenine is actually Cytosine.
One of my mother's is like that. Her other one has a problem at position 677, where it should be Cytosine, but is instead Thymine.
You wouldn't think a tiny change like that could cause so many problems...
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(11-04-2013, 01:17 PM)csrowan Wrote: Now that I'm a bit more awake, I realized I gave the wrong diagnosis in my original post. It's homozygous A1298C MTHFR. Not heterozygous. My mother has heterozygous A1298C and C677T.
That means both copies of my MTHFR gene have a problem in the DNA strand at position 1298, where what is supposed to be Adenine is actually Cytosine.
One of my mother's is like that. Her other one has a problem at position 677, where it should be Cytosine, but is instead Thymine.
You wouldn't think a tiny change like that could cause so many problems...
Are you saying, you got homo--what ever instead of hetero- what ever ?
Sorry couldn't pass that up. 
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I figured someone would mention that.
But, hey, we're all homos here. Most of us anyway. (sapiens, that is)
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This threads not for me, too depressing and I made a vow to never discuss my health with other people after years of listening to others who thought I was interested in their problems.
I've broken my own rule a couple of times from from here on out I'll just let you all know when I', pushin posies, wearing a toe tag, taking a dirt nap... 
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How's my health?
None of your business. Nor do I think it should be the business of my government.
My health should be a matter discussed with my doctor and my family. Period.
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Good luck to you in pursuit of treatment, CSR. I hope you are at least comfortable while waiting for a complete analysis.
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Well, the Mayo Clinic is out for now. They don't take my insurance. But we can apply for a charity case. They're kind of picky, which is understandable. My doctor will have to submit an application, they'll have to review the case, then they'll have to decide if the Mayo Clinic is the nearest place that's qualified to deal with my specific case.
However, they were kind enough to give me the names of the three practicing neurologists in Oregon who are alumni of the Mayo Clinic. I've done some research, picked the one I felt is the most likely to be able to deal with new and unusual symptoms, made sure his office takes my insurance, and had my doctor make a referral.
In the meantime, I'm holding off on the Mayo Clinic. If I'm lucky, this new doctor can help. If not, his notes will be added to my records, which will go to the Mayo Clinic when I finally submit my charity case request.
And Larry, no one is asking you to give any details if you don't want to. Take a look at the first part of my first sentence in my first post: "For those of us willing to expose our actual selves to to the forum..."
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11-27-2013, 01:20 PM
(This post was last modified: 11-27-2013, 01:20 PM by csrowan. Edited 1 time in total.)
Newest update. I've finally seen the last specialist I was referred to months ago. Takes a while to see them all. Their schedules are booked so far in advance.
After running electric shocks through my legs, The doctor told me I have general neuropathy. AKA peripheral neuropathy. I don't have any of the classic symptoms (burning or itching feet, cramping), and I haven't lost enough sensation in my feet for it to be noticeable to me yet, but unless there's some breakthrough, I can expect to slowly lose sensation in my feet and lower legs as I age. Possibly my hands and arms, too.
My grandmother had it too. Once she left one shoe under the table in the dining hall at the clubhouse. We walked outside, down the street, and back to her doorstep across wet grass, and she didn't even realize she only had one shoe on.
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