Please, please, please give me your input...

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Please, please, please give me your input...

Postby StarryChristina » Mon Sep 30, 2013 5:59 am

I had blood tests run a month ago. My results came back:


My cholesterol is high: 272 (normal is < 200)
LDL is 191 (normal < 100)
Non HDL is 219 (normal is < 130)


My CRP levels:
4/17/13: .4
8/1/13: 3.03
9/3/13: 6.77 mg/L My neuro wants it less than 1, my family dr blew it off saying if you get a hang nail it cause your CRP to be high. They are blaming my high cholesterol, glucose, and CRP on my diet. I actually have a very, very good diet. My neuro's nurse said, "Dr. xxx wants you to know that your symptoms will go away but it will take some time because you have to change your diet. Eat things like wild caught salmon and free range chicken." All I can say here is... my diet is great.


Component Your Value Standard Range Units
GLUCOSE FASTING 103 65 - 100 mg/dl
GLUCOSE, 1 HR 226 65 - 200 mg/dl
GLUCOSE, 2 HR 255 65 - 200 mg/dl


My VEP (I believe is fine if I'm reading the test correctly but I will find out more today), Opthamologist said it looks like I had some damage (said it could be inflammation from a couple weeks ago or from when I had Meningitis ten years ago but it is all fine right now).

My memory is horrible, I fall asleep at the wheel when I drive longer than 30 minutes, my right arm has had two burning episodes like when you get an IV with burning meds in it, my left toes have been numb for months, hands tingle, legs ACHE incredibly bad, I had dizziness/vertigo now and then, and the EXTREME fatigue is horrible! Heat doesn't seem to bother me unless I'm like in the shower and I get really breathless. In April I had a brain MRI but they said it was normal. I doubt it was with contrast.

Today I have an EMG/nerve conduction test, but it sounds like they are saying my high cholesterol, glucose (now calling me prediabetic), and CRP and all these problems are caused by my "diet." They are having me read "The Inflammation Free Diet Plan." This has been getting worse for 4 months. I'm just feeling defeated, crazy, and like they found some sort of answers so they're leaving it at that. Does anyone have any thoughts or can tell me to just listen to the doctor or get a second opinion? I know it may not matter, but my two great uncles have severe MS (one passed away from it and the other is wheelchair bound/can hardly speak).

Thank you for reading if you made it this far. I'm just already wanting to cry because I'm afraid the doctor is just pushing me away. I'm so tired of hurting, forgetting everything, and being so stinking exhausted. I'm a 27 year old mother of two darling children (3 and 5) and I don't have time to be laid up on the couch all the time in pain with no help.


THANK YOU! Christina :confused:
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Re: Please, please, please give me your input...

Postby CeeCee » Mon Sep 30, 2013 7:38 am

I have had MS since 1973 and have been on Avonex since around 1995. (Tried most of the others (except the pill since that just came out) and always went back to the Avonex). I like you thought it could be lymes since growing up in a wooded area have had so many tick bites I couldn't even guess how many. The problem with dx ing lymes (from what I've been told is the spirochete (spelling?) hides and won't always show up in the blood test. Apparently if you have Optic Neuritis (which I did in'73) AND you're MRI showed plaque on your brain and/or spinal column (mostly cervical) then you're automatically given a MS diagnosis. In researching lymes it supposedly too can show up on your brain but can't be proven till your autopsy (lol). PLEASE don't take this as "gospel" as there is a lot of controversy on this.i found the info on line while searching lymes vs MS. I had been doing really well (working 3 jobs (2 part time and 1 full time and all the overtime I could get) but then one of my Dr's told me I should slow down (I was 52)and look into disability which I did and now have. BIG MISTAKE!! Please don't do this .. It's a death sentence!! Keep going as long as you can! Get physical therapy whatever your diagnosis is PLEASE keep moving! I was 18 when I was diagnosed and now I'm 58. Please listen to what I'm saying worrying = stress! Live your life and be happy no matter what your dx is YOU control your destiny just keep fighting never give up! <3
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Re: Please, please, please give me your input...

Postby CeeCee » Mon Sep 30, 2013 7:50 am

I have had MS since 1973 and have been on Avonex since around 1995. I like you thought it could be lymes since growing up in a wooded area have had so many tick bites I couldn't even guess how many. The problem with dx ing lymes (from what I've been told is the spirochete (spelling?) hides and won't always show up in the blood test. Apparently if you have Optic Neuritis (which I did in'73 AND you're MRI showed plaque on your brain and/or spinal column (mostly cervical) then you're automatically given a MS diagnosis. In researching lymes it supposedly too can show up on your brain but unfortunately can
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Re: Please, please, please give me your input...

Postby StarryChristina » Mon Sep 30, 2013 8:15 am

Thank you for that. Yeah, I was tested for Lyme three times and all the different strains (except ones you can get from visiting like India) and all came back negative. I have worked out more in 2013 than I have my whole life combined. I even was denied a prediabetic class through my insurance because I don't weigh enough. We shall see, but thanks for the inspiration. :) "Just keep moving... just keep moving..."
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Re: Please, please, please give me your input...

Postby lyndacarol » Mon Sep 30, 2013 8:25 am

StarryChristina wrote:I had blood tests run a month ago. My results came back:

My cholesterol is high: 272 (normal is < 200)
LDL is 191 (normal < 100)
Non HDL is 219 (normal is < 130)


My CRP levels:
4/17/13: .4
8/1/13: 3.03
9/3/13: 6.77 mg/L My neuro wants it less than 1, my family dr blew it off saying if you get a hang nail it cause your CRP to be high. They are blaming my high cholesterol, glucose, and CRP on my diet. I actually have a very, very good diet. My neuro's nurse said, "Dr. xxx wants you to know that your symptoms will go away but it will take some time because you have to change your diet. Eat things like wild caught salmon and free range chicken." All I can say here is... my diet is great.


Component Your Value Standard Range Units
GLUCOSE FASTING 103 65 - 100 mg/dl
GLUCOSE, 1 HR 226 65 - 200 mg/dl
GLUCOSE, 2 HR 255 65 - 200 mg/dl


My VEP (I believe is fine if I'm reading the test correctly but I will find out more today), Opthamologist said it looks like I had some damage (said it could be inflammation from a couple weeks ago or from when I had Meningitis ten years ago but it is all fine right now).

My memory is horrible, I fall asleep at the wheel when I drive longer than 30 minutes, my right arm has had two burning episodes like when you get an IV with burning meds in it, my left toes have been numb for months, hands tingle, legs ACHE incredibly bad, I had dizziness/vertigo now and then, and the EXTREME fatigue is horrible! Heat doesn't seem to bother me unless I'm like in the shower and I get really breathless. In April I had a brain MRI but they said it was normal. I doubt it was with contrast.

Today I have an EMG/nerve conduction test, but it sounds like they are saying my high cholesterol, glucose (now calling me prediabetic), and CRP and all these problems are caused by my "diet." They are having me read "The Inflammation Free Diet Plan." This has been getting worse for 4 months. I'm just feeling defeated, crazy, and like they found some sort of answers so they're leaving it at that. Does anyone have any thoughts or can tell me to just listen to the doctor or get a second opinion? I know it may not matter, but my two great uncles have severe MS (one passed away from it and the other is wheelchair bound/can hardly speak).

Thank you for reading if you made it this far. I'm just already wanting to cry because I'm afraid the doctor is just pushing me away. I'm so tired of hurting, forgetting everything, and being so stinking exhausted. I'm a 27 year old mother of two darling children (3 and 5) and I don't have time to be laid up on the couch all the time in pain with no help.


My preoccupation with excess insulin has evolved to include a caution against wheat, even whole wheat products.

As your glucose level rises, Christina, your pancreas makes more and more insulin, trying to bring the glucose level down again. I encourage you to read Wheat Belly by Dr. William Davis. According to him, the problem in wheat is the new protein gliadin:

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

For a long time I have limited carbohydrates, eating only a little of the "healthy, complex whole-wheat" and unable to lower my insulin level; now I have learned that whole wheat increases the glucose level MORE than a Snickers candy bar!

You may not have the extreme case of celiac disease, but perhaps you have a degree of gluten intolerance. If so, you may have Intestinal Permeability which allows excess insulin into the bloodstream. This can be a cause of peripheral neuropathy. Peripheral neuropathy includes tingling/burning in the extremities of hands/arms and legs/feet.

In your neuro exam, were these things investigated?

http://peripheralneuropathycenter.uchic ... #bloodtest


Were these blood tests also done?


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 recommends magnesium, zinc, and copper also.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think testing for celiac/gluten intolerance is important.)
Lyme disease (Bartman, among other TIMS members, urged this testing.)
HIV/AIDS
Hepatitis C and B
Last edited by lyndacarol on Mon Sep 30, 2013 3:49 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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Re: Please, please, please give me your input...

Postby StarryChristina » Mon Sep 30, 2013 10:19 am

Thanks! I have read your suggestion of that book and was planning on checking that out actually.

Some of the results are:

Vitamin B1 - 94. Range 70-180

Component Your Value Standard Range Units
DGP ANTIBODY, IGG <0.4 <4.9 - EU/ml
DGP ANTIBODY, IGA 1.8 <6.1 - EU/ml
ANTI-HUMAN TTG IgA 0.3 <10.3 - U/ml
ANTI-ENDOMYSIAL IgA Negative Negative -
TOTAL SERUM IgA 160 44 - 441 mg/dL

Component Your Value Standard Range Units
T PROTEIN FOR SPEP 8.4 6.2 - 8.5 g/dl
SPE ALB 5.6 3.2 - 5.7 g/dl
SPE ALPHA 1 0.2 0.2 - 0.4 g/dl
SPE ALPHA 2 0.9 0.6 - 1.0 g/dl
SPE BETA 0.9 0.6 - 1.2 g/dl
SPE GAMMA 0.8 0.6 - 1.5 g/dl
IGG 961 700 - 1632 mg/dl
IGA 170 68 - 400 mg/dl
IGM 228 40 - 263 mg/dl
IMMUNOFIXATION : NO MONOCLONAL PROCESS DETECTED.
ALBUMIN (ELECTROPHORESIS) 5.6 3.5 - 5.0


Component Your Value Standard Range Units
HEMOGLOBIN A1C 5.4 4.3 - 6.0 %
EST AVG GLUCOSE 108
VITAMIN B12 788 193 - 982 pg/ml
FOLATE >20.0 .>4.5 - ng/ml
METHYLMALONIC ACID 0.11 0.00 to 0.40
TISS TRANSGLUTAM AB 4 0 to 19

Now do you have any thoughts? My neuro has been out of the country for three weeks, today is his only day in the office, and he is leaving again tomorrow (his mother is dying)... and he has a two hour appointment with me for the EMG/nerve conduction test. I feel very thankful for that but... I just want answers which I know is hard to get sometimes. Thanks again for your help!

I also had negative HIV/AIDS, Celiac, Lyme (tested several times for Lyme).
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Re: Please, please, please give me your input...

Postby lyndacarol » Mon Sep 30, 2013 4:05 pm

You asked if I had any thoughts… Your testing seems to be very thorough; however, I still urge you to request a "fasting blood insulin test."

FYI, when I was seeking a diagnosis for my symptoms, I had an EMG test – the results were perfectly normal! So were the results from my evoked potential tests and my first three MRIs. I have heard of other people with similar experiences. Don't be surprised if all your testing is also normal.

For many, the road to diagnosis is long. All we can do is be persistent.
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: Please, please, please give me your input...

Postby StarryChristina » Mon Sep 30, 2013 4:35 pm

Thank you again! Well my neuro said, "Did you see your fasting glucose results? We call that a 'BINGO!'" So he said my APRIL MRI, EMG (in my leg) test, VEP, etc. were all normal.

He said I am prediabetic and am glucose intolerant so have to follow the diet plan in "The Inflammation Free Diet Plan," as it apparently ties in with the glycemic index and the inflammatory rating of different foods. I was drinking a lot of beer for 6 months when I went through something but not anymore so I'm hoping this helps to reverse all these symptoms. He stated, "I guarantee you will gradually start to feel better once you change your diet to follow that plan." Hopefully... we shall see. As of right now, he said I do not have MS. I also have been taking strong antibiotics 27 days out of the last 60 and I have Gastritis so we shall see if once these are back to normal (I also am going to begin growing and taking live priobiotics) --- he said this will resolve everything.

Here's to hoping, thanks for listening! Oh yes, my official diagnosis is "prediabetes with peripheral neuropathy and Carpal Tunnel Syndrome." ????
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Re: Please, please, please give me your input...

Postby lyndacarol » Mon Sep 30, 2013 6:28 pm

StarryChristina wrote:Thank you again! Well my neuro said, "Did you see your fasting glucose results? We call that a 'BINGO!'" So he said my APRIL MRI, EMG (in my leg) test, VEP, etc. were all normal.

He said I am prediabetic and am glucose intolerant so have to follow the diet plan in "The Inflammation Free Diet Plan," as it apparently ties in with the glycemic index and the inflammatory rating of different foods. I was drinking a lot of beer for 6 months when I went through something but not anymore so I'm hoping this helps to reverse all these symptoms. He stated, "I guarantee you will gradually start to feel better once you change your diet to follow that plan." Hopefully... we shall see. As of right now, he said I do not have MS. I also have been taking strong antibiotics 27 days out of the last 60 and I have Gastritis so we shall see if once these are back to normal (I also am going to begin growing and taking live priobiotics) --- he said this will resolve everything.

Here's to hoping, thanks for listening! Oh yes, my official diagnosis is "prediabetes with peripheral neuropathy and Carpal Tunnel Syndrome." ????

We hope your neuro is right and you do not have MS. I hope your neuro has found the answer for you. Peripheral neuropathy is recognized as a symptom of diabetes; but I do not know of any symptoms attributed to pre-diabetes alone. (Your glucose number does qualify you as prediabetic, but that does not explain your symptoms, in my opinion.)

A low glycemic diet will reduce the glucose in your bloodstream. But I doubt that this will improve your symptoms because I do not believe the culprit is glucose – I believe INSULIN is causing the damage.

By reducing your glucose with the diet plan, the amount of insulin your body makes should also go down but… the body always overcompensates the amount of insulin for the amount of glucose. In other words, there will always be a little excess insulin.

I suspect that wheat/gluten and antibiotics (You are wise to take probiotics.) have caused Intestinal Permeability (a.k.a. Leaky Gut) which have opened the tight junctions between the cells of your intestinal lining. This allows the excess insulin to leak into the bloodstream rather than pass on down through the intestines and exit your body (Correction: the digestive enzymes secreted by the pancreas enter the small intestine; the pancreatic hormones, of which insulin is one, enter the mesenteric blood vessels, specifically the portal vein. I think wheat gluten simply raises blood glucose and the insulin response.) . I urge you to investigate this line of thinking with the following links:

1. On 5/24/2013 & 12/3/2012 The Dr. Oz Show featured the author and book, Dr. William Davis and Wheat Belly:
Video Pt 1: http://www.doctoroz.com/episode/are-you-addicted-wheat
In Pt 2 the fact that wheat causes a blood sugar spike GREATER than a Snickers candy bar is pointed out!
I HIGHLY recommend his book!

2. A dear friend informed me of the following interview, "Leaky Gut and an Immune System Run Amok," with Susannah Meadows and Leslie Mendoza Temple, MD, who is Director of Integrative Medicine at North Shore University Health System in Glenview, IL, and Assistant Professor of Family and Community Medicine at Feinberg School of Medicine of Northwestern University: http://www.peoplespharmacy.com/2013/07/20/911/

3. Susannah Meadows recounts the story of her son Shepherd's experience with juvenile rheumatoid arthritis in her NYT article: http://www.nytimes.com/2013/02/03/magaz ... d=all&_r=0

You might find it helpful to add the Leaky Gut diet recommendations to those in the diet recommended by your neuro. I DO hope you have found your solution!! I wish you all the best! Please let us know how it goes. We are always here and glad to hear from 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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