New here and full of questions. On journey to Dx

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New here and full of questions. On journey to Dx

Postby chapeltownfs » Fri Oct 19, 2012 4:03 am

Hi Everyone.
My Name is Jenn, I'm 39, married, five kids (four of them bonus), one grandbaby, various pets.
I have been having "seasons of symptoms" for 5 years" and thanks to a caring chiropractor, am on the road to a dx. After several years of being told "It's just stress" and "Stress does funny things to the body", I now feel a strange combination of relief, validation, and....crap! This might NOT all be in my head! I am not certain it is MS, but I am absolutely Certain it's an autoimmune. I don't know if I belong here yet, so I beg your patience and understanding if I just sit in a corner and mostly listen and ask questions. Here is what I know so far, I welcome comments from the peanut gallery. :wink:
5 years ago- 4 months of gastrointestinal issues along with sugar intolerance. I was buying an house at the time, so I chalked it up to stress. I don't remember any other symptoms, but it's hard to forget puking every single day, so I do remember that.

3 years ago- pretty much same thing, no major events stress-wise, some issues with momentary (1 hour, but usually less) unexplainable neurological phenomena. Example: In kitchen, cooking dinner, not a care in the world, when all of a sudden, it feels an awful lot like someone poured a huge pot of boiling water on my hand and forearm.

1 year ago- started a season (mostly gastrointestinal) that lasted from June through February. Finally notice (mid January) headaches are pretty consistantly present with the puking. Entire Digestive system checked out by GI docs. Every possible digestive disease ruled out.

2 months ago- new season begun. Very little puking,but some, and some bowel issues. Bladder issues, mostly tied to mild to moderate activity. Numbness in hands and feet, also usually tied to activity or temporary position; but have lots in the way of Neurological issues. Have days where I just cannot process simple conversation. Having trouble finding right word. Having issues finding information I knew used to be inside this brain. Trouble with time organization and planning. Migraine nearly every day. Forgetfulness, sometimes forgetting entire conversations. Reduced reaction time, leading to more burns in the kitchen and a few near misses on the road. Issues with muscle weakness and pain, Joint pain, severe fatigue. Sexual dysfunction...hypersensitivity, and no release. I have issues with swallowing, and some dry mouth (which could rule ms out) and I drink about 2-3 gallons of fluid day, still thirsty. Drink a lot during dinner, as anything dry or crumbly makes me choke.
Kids start begging me to see a doctor, Chiropractor thinks possible MS. I wasn't even there for me, i was there for dd. Didn't tell him anything, he just noticed something was amiss and gave me a free exam to figure out what it was that he was seeing that was off about me.

Here is what I know for sure at this point:

X-ray showed spinal stenosis Initial visit with Neuro seemed to show some neuropathy, exp in feet.
Initial Blood Tests showed no problems with Thyroid, no problems with vitamin deficiencies. A1C 5.2
Had Sleep Study, Visual, and Auditory Evoked potentials on Tuesday, waiting for Results.
Made to redo the Visual Evoked potentials on Wednesday (said I needed to concentrate harder, even though I was concentrating plenty the day before), Had SSEP on Arms and Legs. Arms went fine. Mildly annoying, but was still able to dose off. Legs, on the other hand: PAINFUL. Mind Blowing. Took every fiber of my being to concentrate to force my muscles to relax so the signal could travel.
MRI of Brain and Spine ordered but not yet scheduled.
Appt. With Urology next week.

I think I have narrowed down the possibilities to: MS, Sjorgren's, RA.....there might be a couple of others, but I can't think of them just now. Although the family gave me a new one: OCD Annoyance. My OCD/constant research annoying everyone else. Told I need to be patient, let the doctors do their job.

Thank you all for your time!
~Jenn
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Re: New here and full of questions. On journey to Dx

Postby jimmylegs » Fri Oct 19, 2012 4:45 am

hi jenn, welcome to the forum. please rest assured that the physical effects of stress are not all in your head!

example:
Stress-induced immune dysfunction: implications for health (2005)
http://www.nature.com/nri/journal/v5/n3 ... i1571.html
"PNI researchers have used animal and human models to learn how the immune system communicates bidirectionally with the central nervous and endocrine systems and how these interactions impact on health."

hmm autoimmune, gi issues, sugar intolerance, neuropathy in the feet, thirsty, anyone looking at markers for diabetes?

Leaky gut and diabetes mellitus: what is the link? (2011)
http://www.ncbi.nlm.nih.gov/pubmed/21382153
"Recent studies investigating the underlying mechanisms involved in disease development in diabetes point to the role of the dys-regulation of the intestinal barrier. Via alterations in the intestinal permeability, intestinal barrier function becomes compromised whereby access of infectious agents and dietary antigens to mucosal immune elements is facilitated, which may eventually lead to immune reactions with damage to pancreatic beta cells and can lead to increased cytokine production with consequent insulin resistance. Understanding the factors regulating the intestinal barrier function will provide important insight into the interactions between luminal antigens and immune response elements." (hint: check zinc status)

question: may i ask which specific nutrient levels have been tested?
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Re: New here and full of questions. On journey to Dx

Postby want2bike » Fri Oct 19, 2012 6:57 am

If you are having problems with your intestines have you considered gluten sensitivity? Might consider a holistic doctor. It is a trail and error approach. The biggest issue with most people is their diet. You can figure it out for yourself. I would start with a raw friut and vegetable diet for a few weeks and see how it makes you feel. If you start feeling better you can add other things in. If you start feeling bad again take that food out of your diet since your body can't tolerate it Here are a few articles to give you something to think about.

http://www.youtube.com/watch?v=Qjr_v7jA ... re=related

http://www.huffingtonpost.com/dr-mark-h ... 79089.html

http://www.youtube.com/watch?v=qKBq9RJo ... re=related

http://www.direct-ms.org/rogermcdougall.html

http://www.youtube.com/watch?v=THddIqz9 ... re=related
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Re: New here and full of questions. On journey to Dx

Postby chapeltownfs » Fri Oct 19, 2012 6:18 pm

Not sure where to start....

Jimmy Legs: To answer your questions, no, I am fairly certain that I am not Diabetic type 1 or 2. Although I do Agree with you that a lot of my symptoms would seem to match up with Diabetes, there are a number of things that don't match up. 1. My symptoms come and go. If I am not suffering from gastrointestinal issues, headaches, fatigue, muscle spasms, joint and muscle pain, I am also not suffering from sugar intolerance. During these times, I can eat whatever and nothing bothers me. 2. Although I had an A1C of 7 three years ago, my A1C's (taken every 6 months) for the last 2 years have stayed pretty consistantly at 5.2. For as long as I have been symptomatic (and I was symptomatic during my last 3 A1C's), it seems that it would have gone up by now. 3. I am not dropping weight, nor am I obese. 4. Urine is negative for ketones, glucose, bilirubin and protein.

As far as leaky gut goes, I think we can rule that one out as well. Last fall, I had upper and lower gi's, upper endoscopy and colonoscopy, and ultrasounds of my entire abdomen. They ruled out: Crohn's, Celiac, Ulcerative Colitis, IBS, GERD, Gastroperesis, and Cancer. Seems like they would have noticed my gut leaking somewhere in there.

Blood Serums: glucose, sodium, potassium, chloride, carbon dioxide, anion gap, bilirubin, protein, albumin, calcium, folate, b12, iron, thyroid all within normal limits. Cholesterol: HDL and Triglycerides great, LDL 2.5 times higher than it is supposed to be. TSH 1.29.
Don't see the code for zinc.
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Re: New here and full of questions. On journey to Dx

Postby jimmylegs » Fri Oct 19, 2012 6:57 pm

k thx for the details!

re testing, ugh i hear you! :S i've had so many tests that didn't pick anything up - they're just not subtle enough to detect certain types of abnormalities and dysfunctions.

great list of bloodwork - may i ask what the b12 and iron levels were? was it serum iron, or serum ferritin?

serum zinc's an important item related to many of the issues you describe, therefore possibly relevant in your case too. serum magnesium is big for others. both are known to be suboptimal (although technically 'normal') in ms patients. and a lot of other patients too :S not to mention, both zn and mg are highly relevant to optimizing vit d3 status - has anyone ever looked at your serum 25hydroxyvitamind3 status in the past?
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Re: New here and full of questions. On journey to Dx

Postby chapeltownfs » Fri Oct 19, 2012 8:01 pm

jimmylegs wrote:k thx for the details!

re testing, ugh i hear you! :S i've had so many tests that didn't pick anything up - they're just not subtle enough to detect certain types of abnormalities and dysfunctions.

great list of bloodwork - may i ask what the b12 and iron levels were? was it serum iron, or serum ferritin?

serum zinc's an important item related to many of the issues you describe, therefore possibly relevant in your case too. serum magnesium is big for others. both are known to be suboptimal (although technically 'normal') in ms patients. and a lot of other patients too :S not to mention, both zn and mg are highly relevant to optimizing vit d3 status - has anyone ever looked at your serum 25hydroxyvitamind3 status in the past?


Jimmylegs~ they didn't tell me specifically what my b12 or iron levels were. It was a serum ferritin, I know that. I think that they also checked d3 the same day (that was two weeks ago) and that was also normal. I can request a printout the next time I go in, they called to give me these results as well as the news about the spinal stenosis. Side note: my wbc has been elevated for my last 4 lab draws, and the Neuro found that unusual, given the face that I wasn't sick at the time.. I do have chronic sinusitis, which along with dry mouth points to Sjogren's...but we will see.
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Re: New here and full of questions. On journey to Dx

Postby chapeltownfs » Fri Oct 19, 2012 8:05 pm

want2bike wrote:If you are having problems with your intestines have you considered gluten sensitivity? Might consider a holistic doctor. It is a trail and error approach. The biggest issue with most people is their diet. You can figure it out for yourself. I would start with a raw friut and vegetable diet for a few weeks and see how it makes you feel. If you start feeling better you can add other things in. If you start feeling bad again take that food out of your diet since your body can't tolerate it Here are a few articles to give you something to think about.

http://www.youtube.com/watch?v=Qjr_v7jA ... re=related

http://www.huffingtonpost.com/dr-mark-h ... 79089.html

http://www.youtube.com/watch?v=qKBq9RJo ... re=related

http://www.direct-ms.org/rogermcdougall.html

http://www.youtube.com/watch?v=THddIqz9 ... re=related



Want2bike~ I have thought about the gluten thing, but, like I was telling Jimmylegs, because my symptoms are not constant, sometimes disappearing for months (or a year) at a time, I am less prone to think this is a dietary issue. I will check out these links though, thank you!
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Re: New here and full of questions. On journey to Dx

Postby want2bike » Sat Oct 20, 2012 6:59 am

The only way to find out for sure if food is an issue is to try an elimination diet. There are toxins all around us making us sick and we have to find what they are and eliminate them. If we do we have a chance of becoming well again. Here are a few things to consider.

http://www.youtube.com/watch?v=XU8nSn5E ... re=related

http://www.youtube.com/watch?v=B0WWXzJu ... re=related

http://www.justmindpower.com/Aspartame.html

http://www.consumerhealth.org/articles/ ... 0303222823

http://www.ebtherapy.com/newsletter_art ... foods.html
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Re: New here and full of questions. On journey to Dx

Postby jimmylegs » Sun Oct 21, 2012 5:26 pm

would love to see those results. normal is a deceptive term to be used with caution and clear understanding. if you can get those printouts it would be valuable info. optimal targets are buried within the 'normal' range and there is a definite zone of illess *within* the normal range for a lot of nutritional markers associated with a wide variety of chronic illnesses.

the high wbc points to a possible zinc issue also. not that you're a rat ;) but nonetheless:

Zinc-deficiency induced changes in the distribution of rat white blood cells.
http://www.ncbi.nlm.nih.gov/pubmed/19436143
"...Zinc-deficiency increased duration-dependently the number of total white blood cells..."

aside - thought this was interesting too "Zinc-deficiency increased serum corticosterone concentration to 1.48 times (p<0.05)" (corticosterone is apparently predominant in rats the way cortisol is predominant in humans)
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Re: New here and full of questions. On journey to Dx

Postby bartman » Sat Oct 27, 2012 3:01 pm

It looks like you have been tested and ruled out many possibilities...the only thing I don't see is probably the most obvious of all considering that your wbc has been elevated for the last 4 draws and you have chronic sinusitus. Lyme disease and coinfections bartonella and babesia. Learn and educate yourself about the biggest controversy in medicine. start with Dr. Burrascano's guidelines.
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