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

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Postby jimmylegs » Thu May 12, 2011 6:36 pm

here's some info on h. pylori testing:
http://www.labtestsonline.org/understan ... /test.html

and a serum zinc test is a great piece of information.

details:

the 'normal' range is 10-20 umol/L.

zinc levels seen in ms patients cluster in the low teens on average. there is a related low uric acid level (194 umol/L is the average in ms; normal range 140-360; healthy controls 290-300).

zinc levels seen in healthy controls in societies where gluten grains are consumed, average in the mid teens.

zinc levels in healthy controls in societies with low gluten consumption (eg thailand study), average in the high teens.

oh and i had a look at the glucose thing too:

this is just from wikipedia:

"In general, the normal range for most people (fasting adults) is about 80 to 110 mg/dl or 4 to 6 mmol/l.

A subject with a consistent range above 126 mg/dl or 7 mmol/l is generally held to have hyperglycemia, whereas a consistent range below 70 mg/dl or 4 mmol/l is considered hypoglycemic.

In fasting adults, blood plasma glucose should not exceed 126 mg/dL. Sustained higher levels of blood sugar cause damage to the blood vessels and to the organs they supply, leading to the complications of diabetes.[3]

Hyperglycemia occurs naturally during times of infection and inflammation.

When the body is stressed, endogenous catecholamines are released that - amongst other things - serve to raise the blood glucose levels.

The amount of increase varies from person to person and from inflammatory response to response."
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby lyndacarol » Thu May 12, 2011 6:58 pm

Toni – You seem to have a very healthy attitude about finding a doctor to work with and pinpointing the problem (or as you say, it could be several).

I believe that there is now a simple breath test for H.pylori – it is now recognized to be the bacterial cause of most gastric ulcers. The scientist, Barry Marshall, who discovered the connection was awarded the Nobel Prize 20 years after his discovery! Medicine moves slowly; I know that some doctors even today still think that ulcers are only caused by stress.

There is undoubtedly a blood test for it as well.

If it can be the long-standing cause of ulcers, if you have it, it seems reasonable that you can have it for an extended period of time.

As for the glucose numbers…, jimmylegs is correct – 100 to 126 used to be called "pre-diabetes"; diabetes was considered to be anything over 126. Recently, I heard that some doctors are considering that diabetes begins at 100 MG/DL.

As for the thyroid hormone tests…, as far as I know you have them all covered. Others here are more knowledgeable, I'm sure, and will jump in with more information. In the book, The MS Solution, by Kathryn R. Simpson, the author explains why she believes her MS was connected to a thyroid problem (or in general, hormone problems).
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Postby ToniH » Thu May 12, 2011 9:32 pm

lyndacarol wrote:Toni – You seem to have a very healthy attitude about finding a doctor to work with and pinpointing the problem (or as you say, it could be several).

I believe that there is now a simple breath test for H.pylori – it is now recognized to be the bacterial cause of most gastric ulcers. The scientist, Barry Marshall, who discovered the connection was awarded the Nobel Prize 20 years after his discovery! Medicine moves slowly; I know that some doctors even today still think that ulcers are only caused by stress.

There is undoubtedly a blood test for it as well.

If it can be the long-standing cause of ulcers, if you have it, it seems reasonable that you can have it for an extended period of time.

As for the glucose numbers…, jimmylegs is correct – 100 to 126 used to be called "pre-diabetes"; diabetes was considered to be anything over 126. Recently, I heard that some doctors are considering that diabetes begins at 100 MG/DL.

As for the thyroid hormone tests…, as far as I know you have them all covered. Others here are more knowledgeable, I'm sure, and will jump in with more information. In the book, The MS Solution, by Kathryn R. Simpson, the author explains why she believes her MS was connected to a thyroid problem (or in general, hormone problems).


I try to keep a healthy attitude. I've been around many people who think modern medicine and specialists and big Pharma are all running a conspiracy to screw up all out of money and laugh over our graves, but I've never had any experience that led me to believe that. My only problem with pharmaceuticals is that we progress at such a rate that new treatments are constantly being developed, studied, and prescribed. Some people think drugs should be studied less so they're not held up, but I don't neccesarily agree. My problem is that, no matter how many studies they do, they can never know everything about a drug or what it will do to a person. I'm guessing that about half of the population has some undiagnosed medical condition, however simple it may be. It's hard to study side effects when people are studied in age ranges where they may be fine, only to have something crop up years down the road that was lying there dormant all along. I appear normal on paper, though my symptoms are clearly abnormal. Funny how all those "vague, weird" symptoms suddenly make my somewhat normal labwork a little more suspicious.

I don't know. I guess I'll study treatment options when I have a definite diagnosis. And I know there are doctors out there willing to help me, but they see thousands of people every year and there are millions of conditions to sift through. I try to do my best to be informed. I'm not gonna leave my health completely up to anyone else--that would be nuts!

And my first step will be these vitamin and nutrient levels that you guys have been so kind to share. My husband takes a laundry list of supplements every day. I guess I'll have my own soon :)

I'll call my doc tomorrow and request a test for h.pylori. I think he feels bad that there's not more on his end he can do, since he's not a specialist and he sees me every few months, along with my growing list of fruitless tests and procedures.
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Postby ToniH » Thu May 12, 2011 9:33 pm

Ah, and thought I'd mention the itching has been especially bad the past few days. It's another symptom that kind of throws me, since my liver panel was normal.
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Postby jimmylegs » Fri May 13, 2011 4:57 am

hey toni is it an itch you can scratch? or is it one you try to scratch and can't really 'find'?
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby ToniH » Fri May 13, 2011 7:10 am

I would say it's more of one I can't find. I was thinking about it last night, and it's not really an itch, per se... it feels like the sensation you get when a peice of hair brushes your skin... you feel it, it's kind of annoying, so you want to scratch or brush it away. But it's different than the abslutely inbearable sensation I get in my arms sometime. THAT feels like my skin is filled with electricity, and I can't stand to be tocuhed when it happens. That's when I have to take my husband's Neurontin and pray I fall asleep.

jimmylegs wrote:hey toni is it an itch you can scratch? or is it one you try to scratch and can't really 'find'?
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Postby jimmylegs » Fri May 13, 2011 3:09 pm

i used to have something i called 'phantom itch'. at first i chalked it up to a new higher folic acid b complex pill. i had my blood tested and my folic acid levels were certainly through the roof. i stopped that b-complex and the problem resolved.

the curve ball: just recently i realized that my current b complex also has the high level that used to give me trouble. so maybe with the other low nutrient levels i used to have, i was more sensitive to high folic acid, or maybe my body just wasn't handling it properly so my serum levels just climbed up over 2000.. i don't know!
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby ToniH » Sat May 14, 2011 10:25 am

jimmylegs wrote:i used to have something i called 'phantom itch'. at first i chalked it up to a new higher folic acid b complex pill. i had my blood tested and my folic acid levels were certainly through the roof. i stopped that b-complex and the problem resolved.

the curve ball: just recently i realized that my current b complex also has the high level that used to give me trouble. so maybe with the other low nutrient levels i used to have, i was more sensitive to high folic acid, or maybe my body just wasn't handling it properly so my serum levels just climbed up over 2000.. i don't know!


One of my tests shows results for folate, but not folic acid. Ah, can't I just give them five vials of blood and tell them to test every nutrient I have?
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Postby jimmylegs » Sat May 14, 2011 10:42 am

that would be awesome! if i have not already done so, i'll fire you a bloodwork link i have on here somewhere.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby jimmylegs » Sat May 14, 2011 11:15 am

my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby ToniH » Sat May 14, 2011 9:59 pm



That was super helpful! Even if it's specific for MS, I'm sure each of those nutrients effects my system in some important way or another and may be related to anything else I have going on. I figure, if they test me for everything MS-related, then by the time these braces come off and they can do the proper MRIs and such, they'll have either ruled it out or found something else. Anything to move the process along while I can. Especially if I can put off a lumbar puncture... I used to require valium to have blood drawn, though I've managed to get over that fear... the lumbar needle is an entirely different thing. Man, I think if I were ever in a situation where they had to test my bone marrow, they'd have to shoot a tranquilizer dart into my neck.
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Postby jimmylegs » Sun May 15, 2011 5:43 am

good! i'm glad. yes, even though those nutrients are 'usual suspects' for ms, you likely noticed that much of the research focused on levels seen in healthy controls. that's usually a pretty targeted 'sweet spot' within the wilderness of the 'normal' range. ps i used to be needle phobic to the point of needing hypnosis. ms has been the great de-sensitizer, in more ways than i expected :)
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby ToniH » Wed May 25, 2011 7:39 pm

I went to have my blood drawn for all these tests yesterday (I had oral surgery Friday so I put it off). I basically had a mental breakdown in the doctor's office. My PCP is in a practice with his dad, and I was going to see his dad (Bob) for this blood work because I couldn't get in with the son (David) until June. I got there and I was informed that David would still have to see me because he would have to order the blood work, and he hadn't seen me since March. I was frustrated, because I told them what I wanted when I called. So I waited, expecting them the nurse to come back in and tell me I would have to reschedule, or I expected old man Bob to come in and just order the damned blood work. Instead, David rearranged some patients so he could see me. He asked how things had been going since March, and I started explaining the most recent problems. I said "Well, the brain problems are much worse. I can't put together sentences. And I've had... two episodes... where I had a problem... recognizing things." And he looked at me, so I said "You know, I didn't recognize the entrance to my house. It looked remodeled. And then, um, I got out of the shower and... didn't recognize myself... in the mirror... and" --and then I started bawling. I really surprised myself. I guess that thsoe closest to me, like my husband, experience these things with me on a daily basis. But to have to explain to someone exactly how shitty my mind is, how my quality of life is deteriorating... it was emotionally exhausting. I cried in between telling him what all the other doctors said. he asked me a few questions and I cried and sobbed and snotted my way through the answers.

When it was over, they took four vials of blood and he said he'd run the tests I asked for in addition to a few more. He's running another renal panel, something about sugar, a few other things. I think seeing me breakdown made my situation seem a little more... sincere? It was obvious I wasn't just crazy or imagining these things, or a hypochondriac. I think it made him take me more seriously.

Last week I sent my cousin's husband a copy of my MRI reports. He's a chiropractor, and I asked him if he thought that the problems with my neck would cause any of my symptoms. The chiropractor that I see on a regular basis said no, that my neck problems wouldn't cause anything like this. And my cousin's husband agreed. Here's his response:

Hey Toni, let me look over all the information and get back to you . I have a few old instuctors that specialize in neuro cases. Do you mind if I send it to them? People come from all over the USA to see one of them. Only problem is he's very busy ,he always said may take two weeks or so for a response to email. I also have a pt that has alot of the same symptoms, but as I am sure you know a big problem is symptoms overlap so much. She actually had brain injury caused from her syndrome without any type of injury period. All the memory loss,
numbness, hand problems, and most of other symptoms-- not saying it is this at all, but look up EDS and see how well it fits. Fairly rare and I think there's at least four different types. Do you have xray and mri pics to send me?

I'd never heard of EDS that I remember, and I didn't think it sounded much like anything that could be wrong with me until I started looking at the symptoms. There are several different types, and most people will have symptoms from all over the board, but what was neat was that I have two of the symptoms that I never thought of as symtpomatic... flat feet and a high, narrow palate.

Ugh, I'm just going to donate my body to science. My body has been exceptionally bad this week. During the day I babysit my father-in-law who has stage-7 Alzheimers... like visiting the ghost of Christmas future.
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Postby ToniH » Tue May 31, 2011 1:56 pm

jimmylegs wrote:here's some info on h. pylori testing:
http://www.labtestsonline.org/understan ... /test.html

and a serum zinc test is a great piece of information.

details:

the 'normal' range is 10-20 umol/L.

zinc levels seen in ms patients cluster in the low teens on average. there is a related low uric acid level (194 umol/L is the average in ms; normal range 140-360; healthy controls 290-300).

zinc levels seen in healthy controls in societies where gluten grains are consumed, average in the mid teens.

zinc levels in healthy controls in societies with low gluten consumption (eg thailand study), average in the high teens.

oh and i had a look at the glucose thing too:

this is just from wikipedia:

"In general, the normal range for most people (fasting adults) is about 80 to 110 mg/dl or 4 to 6 mmol/l.

A subject with a consistent range above 126 mg/dl or 7 mmol/l is generally held to have hyperglycemia, whereas a consistent range below 70 mg/dl or 4 mmol/l is considered hypoglycemic.

In fasting adults, blood plasma glucose should not exceed 126 mg/dL. Sustained higher levels of blood sugar cause damage to the blood vessels and to the organs they supply, leading to the complications of diabetes.[3]

Hyperglycemia occurs naturally during times of infection and inflammation.

When the body is stressed, endogenous catecholamines are released that - amongst other things - serve to raise the blood glucose levels.

The amount of increase varies from person to person and from inflammatory response to response."


Negative for H Pylori, my renal panel came back good, as did my blood sugar and calcium. My iron is lower now than it was at the last test, and my d3 is too low. They also just informed me that I'll have to go to the hospital to have the zinc serum done, something about them not having the right tube. The doctor is prescribing me Celexa for anxiety, probably because I had an emotional breakdown in the exam room. Is that wise, to put me on a medicine like that when I already have such widespread and undiagnosed symptoms?
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Postby jimmylegs » Tue May 31, 2011 4:41 pm

okay. good to know h.pylori is not part of the picture.

i hope you can get the zinc test ASAP.

are they going to run a magnesium test? (it's gold for anxiety)
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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