How can something that's ruining my life not have a name???

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Postby ToniH » Tue Jun 14, 2011 7:38 pm

lyndacarol wrote:ToniH, I suggest again that you and your doctor consider a fasting serum insulin. If the test cannot be performed right away, the sample should be frozen.

http://www.mercola.com/nutritionplan/index2.htm


Factor # 1 : Your Insulin Level
Insulin is absolutely essential to staying alive, but the sad fact is that most of you reading this have too much floating around, and it is pushing you towards chronic degenerative illness and increasing the rate at which you age.
Most adults have about one gallon of blood in their bodies and are quite surprised to learn that in that gallon, there is only one teaspoon of sugar! You only need one teaspoon of sugar at all times -- if that. If your blood sugar level were to rise to one tablespoon of sugar you would quickly go into a hyperglycemic coma and die.
You body works very hard to prevent this by producing insulin to keep your blood sugar at the appropriate level. Any meal or snack high in grain and sugar carbohydrates typically generates a rapid rise in blood glucose. To compensate for this your pancreas secretes insulin into your bloodstream, which lowers your blood sugar to keep you from dying.
However, if you consume a diet consistently high in sugar and grains, over time your body becomes "sensitized" to insulin and requires more and more of it to get the job done. Eventually, you become insulin resistant, and then diabetic.
If you have high cholesterol, high blood pressure, type 2 diabetes, or are overweight, it is highly likely that you are eating too many grains -- yes, even unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.
Compounding the problem, when your insulin levels rise due to an excess of carbohydrates, they send your body a hormonal message telling it to store fat while holding on to the fat that is already there. So not only will excess carbohydrates make you overweight, they will effectively hamper your weight loss efforts too.
Your Fasting Blood Insulin Test
To find out your insulin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin test, The test is done by just about every commercial laboratory and is relatively inexpensive.
Facts about Your Fasting Insulin Test:
• This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful.
A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.
• You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.
• This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.
• If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level. Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.
• Exercise is of enormous benefit in improving the sensitivity of your insulin receptors, and help normalize your insulin level far more quickly
.


This is different than the fasting glucose test, right? Hey, I'm willing to have any and all tests done, especially labwork. How can the doctors get mad with me when they offer no ideas or solutions to this misery?
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Postby ToniH » Tue Jun 14, 2011 7:42 pm

jimmylegs wrote:your high lymphocytes could indicate infection, and if so your resistance will increase once zinc is replete.


Once my body increases its resistance, will it be harder for them to find the cause of the actual infection? If it's an infection that's causing the CNS-type symptoms and the cognitive problems, then I've had it for several years.

Honestly, I'm kind of lost about what to do. Do I take meds for each symptom and risk masking them and getting an incorrect diagnosis, or do I keep letting myself get worse and pray that I'll eventually fall out in public and be taken to a hospital where people will take it seriously.
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Postby jimmylegs » Tue Jun 14, 2011 8:19 pm

you might not have an infection - i'd have to go back and look over the whole list of causes for high lymphocytes.

if you do have an infection, malnutrition may or may not be involved.

i'd suggest considering optimizing your nutrition, then seeing what signs and symptoms are left for additional analysis.

with a zinc level of barely 10, you could be quite susceptible to infection. it could be worthwhile to measure zinc, UA, NH3, *and* lymphocytes, hopefully to see what is going on.

hth!

jl
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Postby lyndacarol » Wed Jun 15, 2011 5:20 pm

ToniH, you asked: "This is different than the fasting glucose test, right? Hey, I'm willing to have any and all tests done, especially labwork."

Yes, there are two different tests: the fasting insulin test and the fasting glucose test. Blood is drawn for both tests – the glucose test can also be done as a diabetic does it with a prick to the fingertip and measurement with a glucose-meter. For accurate results, if the lab will not perform the insulin test right away, the blood sample should be frozen.

I refer you to the article by Dr. Joseph Mercola for the optimal insulin test results – under 5 UU/ML (under 3 is even better).
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Update after seeing new Neurologist

Postby ToniH » Wed Jul 27, 2011 3:10 pm

I saw my new neurologist for the 1st time today. He's the Director of the Neurology program at Kirklin Clinic, which is part of UAB in Birmingham. Great place, great doctors, high ratings. I really liked him. Unlike my last neuro, he seemed concerned rather than mystified by my widespread symptoms. Very thorough first appointment, we talked a way, and he redid some basic exam stuff. With my eyes closed, I sway back and forth even though I don't feel dizzy. Also, he used a sort of vibrating tuning fork type of things to measure sensation in my legs. I "failed" it, so to speak, in both legs. Both knees and both shins, I couldn't feel the vibrations that I should have. He also noticed a generalized weakness in my hands, and my right hand is the weaker, odd since I'm right-handed. He agreed that something is wrong, and that I never should have been sent to a psychiatrist and diagnosed with ADD, that I never needed the Adderall. He also told me that he's not giving me any new medications until he has a clear picture of what this is. I was sooo relieved by that. I've been worried that he might throw a diagnosis of CFS or Fibro on me and just treat a few symptoms, leaving me to get worse. Glad he's not going that route.

He's redoing the MRI, and he's going for a redo of the MRA. Even with my braces, he says he can detract any interference given off by the appliances and still have a perfectly readable MRI if done correctly. Thank the lord!

He went ahead and sent me for lab work, since my insurance has to pre-cert the MRI. I get down into the lab and the nurse takes me to my little area and I sit in the desk-type thing with my arm propped up, and I notice she's playing with like 20 different vials. I think "Oh, she must be restocking or something since she's got a minute." Then she looks at me and says "Hang on, I have to go get two more." So I start sort of panicking, and sure enough, all 15 of those vials were for me. I honestly didn't even know a person could give 15 vials of blood at once. But I did, on an empty stomach. Ugh.

Here's a summary of all the tests I had today:

C-Reactive protein
Hemoglobin A1C
Vitamin B12
ANA screen
Anti-DNA
Rheumatoid Factor Screen
Sjogrens Anti-SSA and Anti-SSB
Tissue transglutaminase Autoantibodies
Sedimentation rate
ACE level
Lyme
SIEP
Copper
Voltage Gated Potassium Channel

Waiting for the results, a little anxious, but glad I found a doctor I like.
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Postby civickiller » Wed Jul 27, 2011 4:42 pm

Have you tried Upper Cervical Care?

when standing straight in front of a mirror, does one shoulder seem higher than the other? if so by roughly how much?
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Postby ToniH » Wed Jul 27, 2011 5:15 pm

civickiller wrote:Have you tried Upper Cervical Care?

when standing straight in front of a mirror, does one shoulder seem higher than the other? if so by roughly how much?


I actually see my chiro pretty frequently. Love that man :) I have a problem with a disc at the base of my neck, so he helps with that as well. But he's also told me that nothing on his end is causing this. My cousin's husband, who is also a chiropractor, agreed.

Nope, my shoulders are fine.
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Postby lyndacarol » Wed Jul 27, 2011 6:53 pm

ToniH – I am so glad to hear you found a doctor you like and can work with. I hope you discussed with him the possibility of having a fasting blood insulin test (I did not see it in your list of tests.) If he would not order this relatively inexpensive test, I am interested to know why not.

An elevated insulin level is part of insulin resistance, the condition I now suspect to be common to all of us with MS. I have learned that skeletal muscle insulin resistance precedes whole body insulin resistance. I have yet to learn the signs of skeletal muscle insulin resistance, but I wonder if they could include muscle weakness, loss of balance, and eventually inability to stand, walk, or run. If the muscle cells are resistant to insulin, they do not allow insulin to "unlock the door" and do not let the glucose (energy source) into the cell. I wonder if your physician would evaluate you for possible insulin resistance.

Again, I am pleased that you have a doctor who is examining many possibilities, who seems so thorough, and who makes a good "partner" in your health adventure.
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Postby ToniH » Wed Jul 27, 2011 7:15 pm

lyndacarol wrote:ToniH – I am so glad to hear you found a doctor you like and can work with. I hope you discussed with him the possibility of having a fasting blood insulin test (I did not see it in your list of tests.) If he would not order this relatively inexpensive test, I am interested to know why not.

An elevated insulin level is part of insulin resistance, the condition I now suspect to be common to all of us with MS. I have learned that skeletal muscle insulin resistance precedes whole body insulin resistance. I have yet to learn the signs of skeletal muscle insulin resistance, but I wonder if they could include muscle weakness, loss of balance, and eventually inability to stand, walk, or run. If the muscle cells are resistant to insulin, they do not allow insulin to "unlock the door" and do not let the glucose (energy source) into the cell. I wonder if your physician would evaluate you for possible insulin resistance.

Again, I am pleased that you have a doctor who is examining many possibilities, who seems so thorough, and who makes a good "partner" in your health adventure.


I didn't mention it to him. I just told him my symptoms and let him go with it. If nothing comes of this round of tests, it will probably be on his next. I really think he'll run every test under the sun until we know something.

What's NOT fun is filling out life insurance paperwork right now. Good lord... every doctor, visit and reason for visit for the past 5 years, along with any treatments and length of recoveries... why don't I just give them this URL. At this point my memory is so shoddy I don't even think I could remember them if it wasn't for my online health insurance records. Thank you BCBS!
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Postby Filmmaker » Thu Jul 28, 2011 5:04 am

ToniH
From what I have read, your symptoms point to rheumatoid arthritis, which is a neurological disease that attacks bones, joints, causes nerve pain and stiffness... it is a painful disease ut it seems to urn itself out in time.... just like many other "autoimmune diseases" which in reality are neurological and not autoimmune...
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Postby ToniH » Thu Jul 28, 2011 9:18 am

Filmmaker wrote:ToniH
From what I have read, your symptoms point to rheumatoid arthritis, which is a neurological disease that attacks bones, joints, causes nerve pain and stiffness... it is a painful disease ut it seems to urn itself out in time.... just like many other "autoimmune diseases" which in reality are neurological and not autoimmune...


That's the oddest thing about whatever I have going on, I really don't feel a lot of pain or stiffness. My muscles feel tired and fatigues and worn out, but they don't hurt like pulled muscles, they just don't work! And my joints have never ached, they just tend to be itchy. The only thing close to painful I've felt is the electric sensation in my right arm, and it's more uncomfortable and than painful. It's just so annoying and uncomfortable that I'd rather chop my arm off because it keeps me awake sometimes. As for stiffness, the only episode I had of that was the morning I woke up and literally couldn't move my neck on its own... I had to use my hands to turn my head. That was a little scary, but I figured it was just the way I slept. I dunno. Whatever it is, I hope they figure it out. The fatigue is killing me. I have to dope myself up with Adderall to have any energy but then I feel like death for two days afterwards, so I just refuse. Loading or unloading the dishwasher is literally too much to handle if I don't have it in me.

But from what I read of those tests, if it's autoimmune it should show up. He's doing the Rheumatoid Factor, the ANA, the anti-DNA, and the Voltage Gated Potassium Channel (I think) would indicate whether or not it could be MS. In the meantime, I just wait on the results and schedule my MRI and MRA. Would RA cause pulsatile tinnitus and the hot flashes and the heat sensitivity?
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Postby lyndacarol » Thu Jul 28, 2011 7:57 pm

ToniH – With my suspicion that MS is the result of insulin resistance (initially, skeletal muscle insulin resistance), I wonder if your description, "My muscles feel tired and fatigued and worn out, but they don't hurt like pulled muscles," doesn't fit especially well with the idea of insulin resistance: the muscle cells (being resistant to the insulin) do not allow the glucose energy source to be admitted; without fuel the muscles would feel tired, etc. They are being starved!

I do again encourage you to discuss the possibility of insulin resistance causing your muscle fatigue with your doctor, although I am not sure that a neurologist would be the most up to date in this area. An internist or GP or certainly an endocrinologist might be more helpful; discuss the topic of metabolic syndrome (of which insulin resistance is part) with any of these specialists.
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Postby ToniH » Fri Jul 29, 2011 9:09 am

lyndacarol wrote:ToniH – With my suspicion that MS is the result of insulin resistance (initially, skeletal muscle insulin resistance), I wonder if your description, "My muscles feel tired and fatigued and worn out, but they don't hurt like pulled muscles," doesn't fit especially well with the idea of insulin resistance: the muscle cells (being resistant to the insulin) do not allow the glucose energy source to be admitted; without fuel the muscles would feel tired, etc. They are being starved!

I do again encourage you to discuss the possibility of insulin resistance causing your muscle fatigue with your doctor, although I am not sure that a neurologist would be the most up to date in this area. An internist or GP or certainly an endocrinologist might be more helpful; discuss the topic of metabolic syndrome (of which insulin resistance is part) with any of these specialists.


Would metabolic syndrome have any relation to metabolic encephelopathy? My last neurologist did evaluate me for that, though he did so without ever mentioning it to me and I only found out thanks to my insurance company.

This neuro seems on top of his game. But I will mention that to him when he calls me with these results. No test will hurt at this point.

What surprises me is that I've felt moderately OK for the few days since they took all that blood. Since they took it on an empty stomach, and I'm already so anemic, I thought I would feel really bad. Heck, I even started my period the same day they took all of it. Why would I feel OK after losing 15+ vials of blood? I know my red cells are always too small, but the neuro said my hematocrit has always been normal. I'm just wondering if losing that volume of blood allowed my body to regenerate some health(ier) cells? I don't know. I'm not a scientist, I just think that's odd.
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Postby lyndacarol » Fri Jul 29, 2011 6:31 pm

ToniH – I understand metabolic syndrome; I know nothing about metabolic encephalopathy; the common word, "metabolic," would lead me to believe there is some common thread having to do with energy burning in the cells. This would be a good topic for discussion with your doctor.

As to your question about why you would feel better after fasting for blood tests and a large blood draw… other people have also noticed some temporary improvement after fasting, reducing caloric intake, donating blood, and plasmapheresis (blood plasma is removed and replaced – also called plasma exchange). I have not heard that anyone has a definitive explanation for this observation. Since I am focused on insulin, I think it is entirely possible that these actions reduce the amount of insulin in the bloodstream temporarily. Fasting and calorie restriction lowers the amount of glucose in the blood to which the pancreas responds with a lower level of insulin. Blood donation (or perhaps a menstrual period) could lower the insulin level, it seems to me. Plasmapheresis is known to take calcium out of the blood, as well as impurities and certain drugs; I have not heard if it also removes insulin, but I suspect it does.

Another good topic for discussion with your doctor.
Last edited by lyndacarol on Fri Aug 19, 2011 5:43 pm, edited 1 time in total.
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Postby ToniH » Sat Jul 30, 2011 9:55 am

It's so interesting to me to see how everything can tie together. I know a lot of people have different theories about how MS works, what causes it, what helps it, etc. But it's always interesting to see theories tie together. I appreciate your info, and I'll update when I know something.

I had a dream last night that the neuro told me there were no white spots on my MRI, but a lot of shadows that shouldn't be there. I didn't know shadows on MRIs existed. I'm just tired of playing the waiting game.
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