Tired and seeking advice from someone who's been where I am

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Tired and seeking advice from someone who's been where I am

Postby TrickL » Thu Sep 26, 2013 1:05 am

My story, like most here is long and probably exceedingly boring to all of you who are nice enough to offer support.

Starting about a year ago I experienced:

Infrequent night sweats
Short term memory issues
And general fatigue

I mostly ignored them as I am a mother of 3 young children. By March of this year the night sweats were occurring almost every night. Being concerned my hormones were out of wack, I finally went to my GP. She did a chest X-ray and bcc with differential to rule out lymphoma since my lymph nodes were swollen. Chest X-Ray was clear and CBC was fairly normal. Vit D was a tad low, as was the Estrdiol E2. 2 weeks later I got a rash that lasted 2 months and eventually covered 75% of my body. GP tried several things to no avail. Saw a dermatologist who said it was most likely a symptom of an underlying systematic disease.
When I ended up in the er due to severe nerve pain on the left side of my face, and had foot drop for 3 days in my left leg, I was sent to a neurologist.

GP did run a auto immune panel. Uric acid was low. ANA was neg as was the rheumatoid factor.

More symptoms:
Muscle/nerve pain in my thighs and calves, left side always much worse.
Weakness in my arms, hands and legs.
High pulse rate
Joint pain (almost all joints from neck to knees)
Shortness of breath (the tight feeling like being squeezed)

He ran a ton of tests. My left side didn't respond normally. My joints are hypermobile.
All blood work was normal. My online medical chart is acting up so I can't get to the results at the moment.
Had a brain MRI with contrast which was normal except for 9 cervical lymph nodes being swollen. Had an excision biopsy which showed benign reactive.
Went to a cardiologist when my heart rate was staying in tachycardia. Diagnosed with inappropriate sinus tachycardia after, echo, holter monitor, pulmonary function test and stress test.

My esr has slowly been increasing. Leg symptoms got worse. Could barely get out of chairs or climb stairs. Had a lumbar MRI which showed only "age related changes". Since I'm only 32 I am baffled by that. So is my GP. I haven't had an appointment with the neuro since those results so I haven't been able to ask him what that means.

The rheumatologist diagnosed me with joint hypermobility syndrome, and the beginnings of osteoarthritis.

The past several weeks has shown a dramatic change in my arms. I've suffered from carpal tunnel in both wrists for years, but only one at a time and for short periods. They've both been acting up for the past several months. Then suddenly I started having pain in my upper forearms, not like my carpal. Then I got shooting pain from my thumb up into my arm. GP was thrown by the fact that I now have De Quervains tenosynovitis and Lateral Epicondylitis (tennis elbow) at the same time. I got a corticosteroid shot and am on a 6 day course of steroids.

I haven't had my zinc or magnesium tested. I have had a ACTH stimulation test (normal results) My next appointment with my neuro isn't until November.
I'm sure I've left some things out, even as long as this is. And I'm praying this makes sense, since the corticosteroids have not let me sleep yet...lol...and it's 4am.


Please feel free to ask me anything. Thank you so much if you managed to read through all of this!!!
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Re: Tired and seeking advice from someone who's been where I

Postby jimmylegs » Thu Sep 26, 2013 5:19 am

hi
I haven't had my zinc or magnesium tested.
:) I can see them both in the mix here - couldn't hurt to rule out their involvement. of the ton of tests run so far, were any nutrients besides vit d3 in the mix? I imagine they did serum ferritin due to the fatigue? any b-vitamins in there, related to the carpal tunnel? (I used to have that :S I feel your pain)
would you consider ordering some tests? if so, due to the joint hypermobility I would look consider looking at serum copper as well..
older possibly relevant conversation: introductions-f20/topic19448.html
excerpt:
Pregnancy and Delivery in Ehlers-Danlos Syndrome: Role of copper and zinc
http://informahealthcare.com/doi/abs/10 ... 8409156699
"serum zinc and copper levels were determined ... the concentrations of both trace elements were low."

that doesn't say too much - you'd expect zinc to be low at the end of a pregnancy anyway. but it is a reasonable thing to test regardless...

these next two show conflicting results in a set of case studies. unfortunately with the sample size being so low the overall significance of these studies is virtually nil, and without full text access and a translation, we can't further critique methodology, or conclusions drawn from data. but, zinc and copper might be worth investigating. there's certainly plenty of very detailed info about zinc as it pertains to ms (and membrane integrity in general) here on this site.

[A case of Ehlers-Danlos-syndrome and its zinc therapy (author's transl)].
http://www.ncbi.nlm.nih.gov/pubmed/566822
[Article in German]
An 8-year-old boy presented a typical Ehlers-Danlos-syndrome. The light- and electromicroscopic findings of both skin- and muscle-biopsy cannot explain the symptoms. A deficiency of zinc and, resulting from this, a defective cohesiveness of collagenous and elastic fibres seems possible. After oral zinc treatment a significant therapeutic effect was seen.

[Treatment of the Ehlers-Danlos syndrome with zinc (author's transl)].
http://www.ncbi.nlm.nih.gov/pubmed/574590
Oral administration of zinc sulfate did not improve the clinical conditions in two patients with Ehlers-Danlos-Syndrome type I. Zinc levels in serum and hair were normal before and during treatment.
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Re: Tired and seeking advice from someone who's been where I

Postby TrickL » Thu Sep 26, 2013 7:26 am

jimmylegs wrote:hi
I haven't had my zinc or magnesium tested.
:) I can see them both in the mix here - couldn't hurt to rule out their involvement. of the ton of tests run so far, were any nutrients besides vit d3 in the mix? I imagine they did serum ferritin due to the fatigue? any b-vitamins in there, related to the carpal tunnel? (I used to have that :S I feel your pain)
would you consider ordering some tests? if so, due to the joint hypermobility I would look consider looking at serum copper as well..
older possibly relevant conversation: introductions-f20/topic19448.html
excerpt:
Pregnancy and Delivery in Ehlers-Danlos Syndrome: Role of copper and zinc
http://informahealthcare.com/doi/abs/10 ... 8409156699
"serum zinc and copper levels were determined ... the concentrations of both trace elements were low."

that doesn't say too much - you'd expect zinc to be low at the end of a pregnancy anyway. but it is a reasonable thing to test regardless...

these next two show conflicting results in a set of case studies. unfortunately with the sample size being so low the overall significance of these studies is virtually nil, and without full text access and a translation, we can't further critique methodology, or conclusions drawn from data. but, zinc and copper might be worth investigating. there's certainly plenty of very detailed info about zinc as it pertains to ms (and membrane integrity in general) here on this site.

[A case of Ehlers-Danlos-syndrome and its zinc therapy (author's transl)].
http://www.ncbi.nlm.nih.gov/pubmed/566822
[Article in German]
An 8-year-old boy presented a typical Ehlers-Danlos-syndrome. The light- and electromicroscopic findings of both skin- and muscle-biopsy cannot explain the symptoms. A deficiency of zinc and, resulting from this, a defective cohesiveness of collagenous and elastic fibres seems possible. After oral zinc treatment a significant therapeutic effect was seen.

[Treatment of the Ehlers-Danlos syndrome with zinc (author's transl)].
http://www.ncbi.nlm.nih.gov/pubmed/574590
Oral administration of zinc sulfate did not improve the clinical conditions in two patients with Ehlers-Danlos-Syndrome type I. Zinc levels in serum and hair were normal before and during treatment.


Thanks for your quick response!

He did do a serum ferritin test. The lab range is 20-300 NG/ML. My result was 38. Also, while I have no idea if it's relevant, my eosinophils have been high the whole time percentage wise, and barely in the normal range for absolute. I know my neuro took an extra vile of blood, but I'm not sure how long those are viable. Other then the zinc, copper and magnesium are there other seldom run tests that MS folks tend to have fairly predictable results?

As to othe results, my sodium and chloride are always on the high side of normal, potassium on the low side of the normal range. My B12 results were normal.

I've seen several posts about people having negative scans for years, but is it common to have neg scans while having active issues? And has anyone been told in their 30's that they had age related changes on their lumbar scans?
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Re: Tired and seeking advice from someone who's been where I

Postby jimmylegs » Thu Sep 26, 2013 8:21 am

no worries :)

you'd do better to have that ferritin up closer to the 80-90 range. but, you can't just go take iron pills esp if your zinc is down. you need to work on iron and zinc together. it takes a bit longer to get the levels up but is safer than picking one and boosting it quickly, to the detriment of the other.

when working on iron, a cheap magnesium form like magnesium oxide can help keep you from getting too backed up. you just have to be careful with cheap magnesium and work uip slowly to find your limit. it can cause an unfortunately surprising GI problem in the other direction :S eep!

there are quite a few things that are known to be low in ms patients, but are not tested as part of mainstream diagnostic practice. the gap between science and policy/practice strikes again! if you can get numbers for magnesium zinc and copper you will have enough to go on with for now. fixing those can improve your retention of other nutrients from food, so there's really not too much sense in testing everything at the outset.

magnesium deficit can cause problems with potassium status, so that could be linked to your ongoing low K numbers.

re b12, the definition of deficient is faulty. and the meaning of 'normal' is fraught with the usual pitfalls. if it's over 500 in pg/ml you are in good shape.

lots of people have clear scans while experiencing neuro symptoms. i don't think the testing for evidence of damage after the fact is a proactive enough approach. it's broken biochemistry that causes these things to happen in the first place. that's where testing should be focused.

i have spinal deterioration that would be classified as age-related. my neuro said i have 'a ratty neck for my age'. i am chronically dehydrated unless i work at it. this results in low blood pressure and poor spinal disk nutrition among other things.

there are private facilities where you can order some blood tests and receive a requisition without spending a fortune, depending where you live. are you in the states?
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Re: Tired and seeking advice from someone who's been where I

Postby lyndacarol » Thu Sep 26, 2013 10:42 am

Welcome to ThisIsMS, TrickL. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS - my personal suspicion is that excess insulin (and resulting insulin resistance) is responsible for many MS (or "neurological") symptoms.

First, you may not have MS at all, but there is a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities. You and your GP have made a good start with your testing.

This description of a neurological exam might be helpful to you as you prepare for your November neuro appointment. Take your list of symptoms to the appointment: http://peripheralneuropathycenter.uchic ... #bloodtest

I read the section on blood tests and think it offers good recommendations:


Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels (Jimmylegs suggests also zinc, magnesium, among others.)
Thyroid, liver and kidney functions (Other sources suggest specifically the thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies.)
Vasculitis evaluation
Oral glucose tolerance test [My suggestion is specifically the "fasting blood insulin test" (optimal result would be 3 UU/ML or lower).]
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B


Currently, I suspect that Intestinal Permeability allows too much of my insulin to leak from the intestines into the bloodstream, from which it affects muscles.
According to Dr. William Davis, author of Wheat Belly (By the way, I recommend this book highly.), the problem in wheat is the new protein gliadin:

http://www.cbsnews.com/8301-505269_162- ... ctor-says/

All the best to 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: Tired and seeking advice from someone who's been where I

Postby TrickL » Thu Sep 26, 2013 4:11 pm

These are the tests and procedures I've had since this past March. All were neg/normal unless noted differently.

Blood tests:

Comprehensive metabolic panel( at least 3 of them)
Celiac eval
Lupus anticoag screen
Ck total
Ana
Ptt
Prothrombin time-inr
Mthfr mutation
Hemochromatosis mutation
A1 Antitrypsin phenotype
Silica clott NG time
Protein electrophoresis, serum
Serum immunofixation
Homocysteine
Glycated hemoglobin A1C ( my insulin has been closely looked at many times, and I check at home occasionally since my father has type 2 diabetes. It's always normal)
Ferritine
Methylmalonic acid
Cardiolipin antibody
Celiac disease eval
Uric acid (was low)
Rheumatoid factor
Esr (it got higher each time, but final check was only slightly above the normal range)
C-reactive protein
T3 total
Thyroid peroxidase ab
T4 free
TSH
Antithyroglobulin ab
Thyroglobulin qn

Vitamin B12 level was 428
Vitamin D, 25 hydroxy total was 33.6ng/ml

Estradiol e2 (checked twice, low both times)
Parvovirus and another virus that I can't remember


Physical tests:

MRIs of brain with contrast, and spine
Ct with contrast of neck, chest abdomen and pelvis
Chest X-ray
Pulmonary function test
ACTH stimulation test
Excisional lymph node biopsy
Holter monitor for 48 hours
Cardiac stress test
Echocardiogram
Colonoscopy for supposed unrelated issue

I had an EMG and nerve conductivity study's scheduled but canceled it after my lumbar MRI didn't show anything useful. I will be discussing it with neuro at the next appointment. I'm sure I don't have everything listed. I haven't gotten copies of everything.

I have been diagnosed with inappropriate sinus tachycardia, TMJ, joint hypermobility, and the beginnings of osteoarthritis. I already suffer from migraines.

I think I answered all the questions....but the lack of sleep last night has caught up with me. Hopefully this all makes sense. My neurologist has been working on this since April and promises he'll figure it out. I believe him, but he has a busy practice as there aren't a ton of neuros in my area and he doesn't spealize in MS. Thanks again!
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Re: Tired and seeking advice from someone who's been where I

Postby lyndacarol » Fri Sep 27, 2013 9:57 am

TrickL wrote:These are the tests and procedures I've had since this past March. All were neg/normal unless noted differently.

Blood tests:
...
Glycated hemoglobin A1C ( my insulin has been closely looked at many times, and I check at home occasionally since my father has type 2 diabetes. It's always normal)
...
I had an EMG and nerve conductivity study's scheduled but canceled it after my lumbar MRI didn't show anything useful. I will be discussing it with neuro at the next appointment. I'm sure I don't have everything listed. I haven't gotten copies of everything.

You should feel very confident in your medical team. It is obvious that they are considering and testing every possibility.

After reading your post, I have but two suggestions:

1. Ask for a copy of all your test results (with the actual number results) and keep your own medical file at home.

2. Diabetes is determined by the glucose (a.k.a. blood sugar) level. Glucose tests are routinely done; this is an entirely different test from an insulin test. An insulin test must usually be specifically requested (although sometimes doctors will order an insulin test in the case of suspected type II diabetes; to my knowledge, this cannot be done in a home test) – it involves a blood draw at a lab (the blood sample must be frozen if the test will not be conducted at once, since insulin degrades quickly). I do not identify the "fasting blood insulin test" on your list; and I suggest you double check with your doctor that you have had one.

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

Factor #1: Your Insulin Level
Insulin and leptin are absolutely essential to staying alive, but the sad fact is that most of you reading this have too much, 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 and leptin 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 0unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.

Compounding the problem, when your insulin and leptin 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 and leptin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin and leptin test, The tests are done by just about every commercial laboratory and the insulin test is relatively inexpensive.

Facts about Your Fasting Insulin Test:
o 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.

o 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.

o 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.

o 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.

o Exercise is of enormous benefit in improving the sensitivity of your insulin and leptin receptors, and to help normalize your insulin level far more quickly.



I too believe your neurologist's promise that he will "figure it out" – it will take time and perseverance. You and your medical team obviously have what it will take!
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: Tired and seeking advice from someone who's been where I

Postby jimmylegs » Fri Sep 27, 2013 4:31 pm

magnesium, zinc and copper still top my list of missing tests.

rationale for zinc testing includes its influence on b12, magnesium and d3 status, on liver function, thyroid function, glucose handling, sensitivity to gluten, vascular health, immune system function including resistance to infections such as hepatitis, etc etc etc. the research is out there.

for example:
Serum trace metals in chronic viral hepatitis and hepatocellular carcinoma in Thailand
"Compared to healthy volunteers (n=30), serum zinc levels were significantly decreased in patients with chronic active hepatitis, cirrhosis, and hepatocellular carcinoma (P≤0.0001)"
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Re: Tired and seeking advice from someone who's been where I

Postby TrickL » Sat Sep 28, 2013 12:04 pm

That is some awesome info. I have not had a fasting glucose test done since last pregnancy (2008). I will be requesting it, the zinc, copper, and magnesium levels. I have 85% of my test results with numbers. I was just to lazy to write them all. If there are certain ones you'd like the actual numbers on, I'd be happy to give them.

I do have another question. I was given a corticosteroid shot last Tuesday and put on a 6 day course of methylprednisone for tedonitis and De Quervains Tenosynovitis. Along with alleviating the pain from the inflammation, I've had energy for the first time in months. From what I've read online, that isn't the usual reaction other then being able to do more because the pain is gone. It's a tiered dosage, where you take less every day. I'm on days 4 and even though the pain hasn't returned, I am again feeling the constant drag of fatigue. Any ideas on why this is happening? Thanks again for all the advice and suggestions. I will be calling my neuro to see if my appointment can be moved up. Having three days of feeling like my old self has renewed the feeling of urgency to figure this out. I hate being tired all the time and not being able to get anything done because of it.
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Re: Tired and seeking advice from someone who's been where I

Postby lyndacarol » Sat Sep 28, 2013 12:51 pm

TrickL wrote:I have not had a fasting glucose test done since last pregnancy (2008). I will be requesting it, the zinc, copper, and magnesium levels. I have 85% of my test results with numbers. I was just to lazy to write them all. If there are certain ones you'd like the actual numbers on, I'd be happy to give them.

I do have another question. I was given a corticosteroid shot last Tuesday and put on a 6 day course of methylprednisone for tedonitis and De Quervains Tenosynovitis. Along with alleviating the pain from the inflammation, I've had energy for the first time in months. From what I've read online, that isn't the usual reaction other then being able to do more because the pain is gone. It's a tiered dosage, where you take less every day. I'm on days 4 and even though the pain hasn't returned, I am again feeling the constant drag of fatigue. Any ideas on why this is happening? Thanks again for all the advice and suggestions. I will be calling my neuro to see if my appointment can be moved up. Having three days of feeling like my old self has renewed the feeling of urgency to figure this out. I hate being tired all the time and not being able to get anything done because of it.


The fasting glucose test is good to request, but also request "the fasting blood insulin test." These are two different tests. The glucose level can be high (above 126 mg/DL = diabetes) or normal or low in the presence of a high insulin level. There is no correlation between the results of these two tests. I believe it is the excess insulin initiating the MS cascade.

I have questions about the glucose test done with your last pregnancy (2008): Was this done WHILE you were pregnant – routine testing for gestational diabetes? Was your glucose level high at that time? Or was the glucose test done AFTER your child was delivered because you were experiencing some symptom? Pregnant women produce more insulin in order for the fetus to grow and put on weight. I believe that some women do NOT revert quickly to normal insulin production after delivery.

By the way, corticosteroids, such as prednisone, methylprednisolone, etc., raise the blood sugar level. In response to the elevated blood sugar, the pancreas secretes increased insulin. I suspect the increased insulin is initiating insulin resistance in your cells and your body feels fatigue because the cells are not admitting enough of the glucose energy source. (And you are not consuming enough fat for the body to switch over to ketone bodies as its energy source.)

Please be aware that I am unconventional in my thinking (I am rather a "maverick" here.); I have found NO researcher who shares this hypothesis.
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: Tired and seeking advice from someone who's been where I

Postby TrickL » Sat Sep 28, 2013 3:52 pm

lyndacarol wrote:
The fasting glucose test is good to request, but also request "the fasting blood insulin test." These are two different tests. The glucose level can be high (above 126 mg/DL = diabetes) or normal or low in the presence of a high insulin level. There is no correlation between the results of these two tests. I believe it is the excess insulin initiating the MS cascade.

I have questions about the glucose test done with your last pregnancy (2008): Was this done WHILE you were pregnant – routine testing for gestational diabetes? Was your glucose level high at that time? Or was the glucose test done AFTER your child was delivered because you were experiencing some symptom? Pregnant women produce more insulin in order for the fetus to grow and put on weight. I believe that some women do NOT revert quickly to normal insulin production after delivery.

By the way, corticosteroids, such as prednisone, methylprednisolone, etc., raise the blood sugar level. In response to the elevated blood sugar, the pancreas secretes increased insulin. I suspect the increased insulin is initiating insulin resistance in your cells and your body feels fatigue because the cells are not admitting enough of the glucose energy source. (And you are not consuming enough fat for the body to switch over to ketone bodies as its energy source.)

Please be aware that I am unconventional in my thinking (I am rather a "maverick" here.); I have found NO researcher who shares this hypothesis.


I may be too tired to connect the dots on the part about the corticosteroids. Wouldn't the fact that I was fatigued before starting the steroids, and now that I'm only taking a small amount mean that they were fulfilling something I was missing? Or making something function correctly to fulfill a deficit and now that they are gone, the deficit is returning?

The fasting glucos test was during pregnancy. I failed the required 1 hour test in all three, but passed the 3 hour tests if all three. Hope that helps!
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Re: Tired and seeking advice from someone who's been where I

Postby lyndacarol » Sun Sep 29, 2013 1:54 pm

TrickL wrote:
lyndacarol wrote:
The fasting glucose test is good to request, but also request "the fasting blood insulin test." These are two different tests. The glucose level can be high (above 126 mg/DL = diabetes) or normal or low in the presence of a high insulin level. There is no correlation between the results of these two tests. I believe it is the excess insulin initiating the MS cascade.

I have questions about the glucose test done with your last pregnancy (2008): Was this done WHILE you were pregnant – routine testing for gestational diabetes? Was your glucose level high at that time? Or was the glucose test done AFTER your child was delivered because you were experiencing some symptom? Pregnant women produce more insulin in order for the fetus to grow and put on weight. I believe that some women do NOT revert quickly to normal insulin production after delivery.

By the way, corticosteroids, such as prednisone, methylprednisolone, etc., raise the blood sugar level. In response to the elevated blood sugar, the pancreas secretes increased insulin. I suspect the increased insulin is initiating insulin resistance in your cells and your body feels fatigue because the cells are not admitting enough of the glucose energy source. (And you are not consuming enough fat for the body to switch over to ketone bodies as its energy source.)

Please be aware that I am unconventional in my thinking (I am rather a "maverick" here.); I have found NO researcher who shares this hypothesis.


I may be too tired to connect the dots on the part about the corticosteroids. Wouldn't the fact that I was fatigued before starting the steroids, and now that I'm only taking a small amount mean that they were fulfilling something I was missing? Or making something function correctly to fulfill a deficit and now that they are gone, the deficit is returning?

The fasting glucos test was during pregnancy. I failed the required 1 hour test in all three, but passed the 3 hour tests if all three. Hope that helps!

I have no formal medical background. Like you and everyone else here at ThisIsMS, I try to connect the dots about MS. I present to you the facts I know and my suspicions; I consider that we are friends discussing our thoughts over a cup of tea – I share what I think fits the circumstances; you may not agree with my ideas.

Fact: You were "fatigued before starting the steroids." My hypothesis: I think your body already had excess insulin in the bloodstream at that time (for any number of reasons – elevated glucose from diet, from mucus due to virus/allergy; virus or bacteria affecting the pancreas; a BCG vaccine against TB increases insulin production; Intestinal Permeability simply allowed too much insulin into the bloodstream, etc.). This excess insulin was starting to make your cells insulin resistant (and when that happens glucose cannot enter the cells and be used as the energy source – THIS is the source of the fatigue, I think)

Fact: Then, corticosteroids were given to you. Fact: Corticosteroids do raise the blood sugar level! Fact: The body secretes more insulin in response to more blood sugar! My hypothesis: With insulin resistant cells, the pancreas was "shouting louder" or "pounding on the door" of the cells demanding that the glucose be let in. And for a time the cells DID let the energy source inside. At that time, I think your body was feeling better. BUT…

The increased amount of insulin in your body made the cells EVEN MORE resistant. Now your cells are back to being starved of energy; only even more insulin "shouting even louder" will get those cells to open up and receive glucose.

I see only two solutions: 1. Keep producing MORE and MORE insulin (which will eventually burn out the insulin-producing cells of the pancreas… Presto! Type I diabetes) OR 2. Make the cells sensitive to insulin again and reduce the amount of insulin necessary to open the cells (To my knowledge, diet is the only way to do this.).

Now, as for your glucose tests during pregnancy… I assume when you say "failed" the one-hour tests, you mean the glucose levels were elevated. And when you say "passed" the three-hour tests, you mean the glucose level had come down again. If this is the case, it seems quite normal: when you consumed glucose, your blood glucose level went up; your pancreas reacted appropriately, making more insulin and your glucose level went down again. But did it go back down to a low level again? How quickly? Only a test of the insulin level at that time could have told us.

But an insulin test NOW can tell you if there is too much insulin in your bloodstream at this time.

And that is my interpretation of events. It surely seems possible to me.
Last edited by lyndacarol on Sun Sep 29, 2013 8:28 pm, edited 1 time in total.
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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lyndacarol
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Re: Tired and seeking advice from someone who's been where I

Postby TrickL » Sun Sep 29, 2013 7:54 pm

I didn't mean to offend. I was just asking for clarification by explaining how I was seeing it. I do see your point now. I will talk to my neuro about getting the insulin test done as well. I am eager to look at any possible causes of these issues, so I can get back to feeling well and being able to keep up with my kids.
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Re: Tired and seeking advice from someone who's been where I

Postby lyndacarol » Sun Sep 29, 2013 8:24 pm

TrickL wrote:I didn't mean to offend. I was just asking for clarification by explaining how I was seeing it. I do see your point now. I will talk to my neuro about getting the insulin test done as well. I am eager to look at any possible causes of these issues, so I can get back to feeling well and being able to keep up with my kids.

Absolutely no offense was taken. I know you were asking for an explanation; I was trying to be very clear because I know I have been misunderstood in the past. I apologize if my explanation was too "elementary:" in these virtual world exchanges, one never knows where the other person's level of knowledge begins.

We are all in this prison together – we all want to be able to get back into life as we knew it. We are all rooting for 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: Tired and seeking advice from someone who's been where I

Postby TrickL » Sun Sep 29, 2013 8:36 pm

Your explanation was perfect. That is the one thing I dislike about virtual communication, is we have no tone of voice and innocent things can come across the wrong way. I sincerely appreciate the help and suggestions. Was insulin behind some of your ms symptoms?
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