Going through HELL...

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Going through HELL...

Postby newfluv » Thu Nov 29, 2012 7:42 am

Hi...I am so happy I found this site! I am now just starting with all the wonderful testing that goes along with finding out what the heck is going on with me. My journey started last summer 2011. I had 3 episodes of falling, just walking along and boom down I would go. My husband thought I was passing out but I never blacked out. He couldn't understand how I could just fall like that. Then I started having vertigo, first just when I laid down in bed the whole room would spin or I should say I spun...then it was many episodes all through the day. It got so bad I couldn't drive as I thought I would be in an accident. That lasted for 3 months or so. Then as fast as it came it went away. I went to my GP and he sent me to a cardiologist thinking it was heart related. I had tons of every heart test available and nothing...then the fatigue hit. When I say I was exhausted I mean I may have had a good 2 hours in 24 hours to do anything. I just wanted to sleep. Fast foreward to this year, no more falling, no vertigo, fatigue better but not great, then I started getting pains in my ankles to the point when I would sleep I would wake up from the pain. My arm would ache and when I went to grab something, sometimes I would drop it. Now my legs are always aching like I just ran a race, sometimes feel really heavy and sometimes they just feel like they don't want to work. Also had burning pain on one side of my face and one arm like a really bad sunburn but nothing was there. Having trouble with my eyesight. Feels like a film is over my eyes at times. And the worse was talking to my hubby one night and my words came out in half words. He looked at me like I was joking around but I wasn't. That scared me enough to go back to my GP so here I am waiting on all these wonderful blood tests results to come back and the MRI. I just want to know what is going on with me. I am really scared they won't find anything at all and I still have all these weird symptoms...
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Re: Going through HELL...

Postby wolfette » Thu Nov 29, 2012 1:32 pm

Hi newfluv, I know what you mean. I was diagnosed last month on Oct.22nd, MRI showed multiple lesions in the white matter of my brain. I too have the tired, weak legs, my main complaint. I get that burning ankle pain too, which I was told is nerve pain..in any event it's horrible! My heart goes out to you, and just know that you are not losing your mind, and that diagnosis can take a while. The only medicine I choose to be on right now is Horizant (a form of Gabepentin) for my legs at night and it really helps me. I have a very supportive husband, and don't know what I'd do without him. I have RRMS (relapsing, remitting) Please keep us/me updated, we're here for you.
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Re: Going through HELL...

Postby newfluv » Fri Nov 30, 2012 4:37 pm

Went to the Dr today for more blood work...I saw that the Dr. had written down on all the tests he wanted taken, fatigue and arthropathy (which is conditions of the joints). I am getting frustrated because all of my symptoms do not relate to joints. How long does it take to get an accurate diagnosis. It is not like I want to have MS and would be plenty happy with some simple explanation but I am getting to the point of really hurting all the time and something is wrong. My husband KNOWS something is wrong...we just need answers instead of questions. It is very frustrating. Thanks for listening..would really appreciate some adivce of what I can say to convey my symptoms better.
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Re: Going through HELL...

Postby MissMichele26 » Fri Nov 30, 2012 4:58 pm

Hi there. Well, it took me a total of 21 days. My initial exasperation was I lost the left side of my face. Went to GP. He did some basic stuff in the exam room then came back w/book on nerves. He referred me to neurologist who ordered the MRI. It was very clear. That was 2001.

I'm surprised you haven't seen neuro yet of had an MRI. If everything else has been done and the big 'c' has been ruled out and other diseases through all your blood work, then what's the GP waiting for? Advocate for yourself and demand a referral to neuro for MRI.
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Re: Going through HELL...

Postby lyndacarol » Fri Nov 30, 2012 8:24 pm

Since I believe that too much insulin in the body is responsible for MS symptoms, I encourage everyone with the MS diagnosis or symptoms (I think the "sunburned, shivery" feeling I have in my feet and legs is due to damage inside the blood vessels from excess insulin.) to request a "fasting blood insulin test" (the optimal result is 3 UU/ML or lower). The INSULIN test is NOT the same as the glucose test done for diabetes.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Going through HELL...

Postby want2bike » Sat Dec 01, 2012 3:40 am

I have a question concerning insulin testing. I usually have a Hemoblobin A1C test done every year. Definition of this test is "Gives information about your diabetes (sugar or glucose) control over the past 3 months. Your target is to keep your AIC below 7%. My question is how does this compare to the insulin test you refer to? This test is given in terms of percentage and the test you list gives the data in terms of UU/ML. Is this the same test and if so what would be the relationship between % and UU/ML?
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Re: Going through HELL...

Postby newfluv » Sat Dec 01, 2012 7:00 am

My tests results are supposed to be back on Tuesday. Hopefully if nothing else shows up he will send me to the neurologist as I had asked for before the last set of blood tests. This is the second go round on blood testing...they took I believe 6 or 7 more tests this time. What treatments are you getting for your symptoms. I have read that the medications don't relieve the pain but prevent more serious symptoms down the road. I don't know how much more of this I can stand at this point. Last night as I was sitting watching TV I had 3 incidences of stabbing pain in my left rib cage area. That was a new one...not fun!
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Re: Going through HELL...

Postby lyndacarol » Sat Dec 01, 2012 7:29 am

To your EXCELLENT question, want2bike… Your hemoglobin A-1 C test is looking at blood sugar (a.k.a. glucose) over the previous three months, just as you say. The insulin test is looking at the hormone (insulin) produced in the pancreas. These are two different tests, looking at two different substances. The results of the two tests are unrelated.

I think the confusion comes because the first purpose for insulin is to sweep the glucose out of the bloodstream (carrying it to the cells and unlocking the cell door so that the glucose can enter and be burned for fuel; glucose is also stored in the liver and muscles as glycogen for later use; the third location for glucose is when it is stored as fat in fat cells for much later use).

If the body produces too much insulin over a period of time, the cells become resistant to the insulin and do not allow it to unlock the cell door. So the glucose remains in the bloodstream. The pancreas continues to pump out more insulin in an attempt to remove the glucose. And the cells become more and more resistant until finally the pancreas is exhausted and quits producing insulin altogether.

The first period when the cells are resisting the insulin and more and more insulin is being made is called type II diabetes – the glucose is remaining in the bloodstream, but the insulin level is high. For a short while the high level of insulin is effective at "beating down the cell door and getting the glucose inside; but eventually it just can't make enough. Diabetes is determined by the high level of GLUCOSE.

When the pancreas is exhausted and produces NO insulin, glucose again remains in the bloodstream. The situation is called type I diabetes because the GLUCOSE level is high.

So… the insulin levels can be high or low; the glucose level can be high or low – one result is not necessarily related to the other.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Going through HELL...

Postby want2bike » Sat Dec 01, 2012 8:59 am

I get a GLU test which measures the glucose in my body. I get the HGA1C which measures glucose control over the past 3 months. What is the name of the insulin test I am suppose to get?
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Re: Going through HELL...

Postby lyndacarol » Sat Dec 01, 2012 11:44 am

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.

Your 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.


As stated above, the test to ask for is the "fasting blood insulin test."
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Going through HELL...

Postby NHE » Sat Dec 01, 2012 9:57 pm

want2bike wrote:I have a question concerning insulin testing. I usually have a Hemoblobin A1C test done every year. Definition of this test is "Gives information about your diabetes (sugar or glucose) control over the past 3 months. Your target is to keep your AIC below 7%. My question is how does this compare to the insulin test you refer to? This test is given in terms of percentage and the test you list gives the data in terms of UU/ML. Is this the same test and if so what would be the relationship between % and UU/ML?


The HbA1C test measures the percentage of hemoglobin that has sugar stuck onto it, i.e., glycosylated. It's an indicator of chronically elevated blood sugar levels.

http://labtestsonline.org/understanding ... tab/sample

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Re: Going through HELL...

Postby want2bike » Sun Dec 02, 2012 6:32 am

Thought the test might have a name but the article I find does not show that. When I ask my medical office about the fasting insulin test they seem to think it is the AIC test. Looks like I will need to go somewhere else to get the test.

http://newhopehealthcenter.com/dynamic_ ... tests.html
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Re: Going through HELL...

Postby lyndacarol » Sun Dec 02, 2012 9:10 am

want2bike, I have one caution that you may wish to discuss with the lab that does the fasting blood insulin test for you: The blood should be tested soon after it is drawn because insulin degrades quickly. If the blood cannot be tested soon after the draw, it should be frozen. For instance, if the blood is drawn on a Friday afternoon, but the test will be done on Monday, ask how they store it in the meantime – it should be frozen.

By the way, the article you posted from New Hope Health Center did a MUCH better description of insulin/hyperinsulinemia than I ever could! Thank you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Going through HELL...

Postby newfluv » Tue Dec 04, 2012 9:58 am

My tests results came back with low Vit D at 27.2 and my B12 was at 395. Everything else was good. I have the referral to the neurologist but haven't gotten an appt. yet. My cholestral was high also, 271 with the LDL at 194. Anything unusual with these counts? Still feeling the crap!
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Re: Going through HELL...

Postby jimmylegs » Tue Dec 04, 2012 12:23 pm

hi new, iima, what units are those d3 and b12 results in? also, what was the 'everything else' that was tested?
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