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RE: Doing Something Stupid Intelligently - 2/18/2009 4:17:32 PM   
lovingpet


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The calcium issue had to do with my parathyroid hormone being elevated.  This can be a result of the vitamin D deficiency, but can also means such a crucial nutrient could become dangerously out of balance.  The local doctors would not be very adept at handling this, so it is avoided altogether.  I am still pushing for the next level of testing on this, convinced that this has a part of the key for me.

CFS and Fibro can occur together and both tend to have a lot of underlying things that can be successfully treated and help ease the conditions.  Now I am not really sure if they were looking for other sleep disorders when they did the testing, but will find out.  I was just told the study was normal.  Lots of things to look into.

lovingpet

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RE: Doing Something Stupid Intelligently - 2/18/2009 4:32:38 PM   
thornhappy


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quote:

ORIGINAL: lovingpet

Sleep apnea has been eliminated.  My weight gain came after symptoms and this has gone on for years now, but reach a fever pitch this past year.  Depression has been thrown out there, but I have no tolerence for the meds, so I am more or less left to deal on my own or with more natural means.  When I say barely awake and functioning, I mean that I get so exaughsted out of the clear blue that I am actually sick.  It takes nothing for this to happen.  I deal with moderate levels of pain every day and more severe pain with increasing frequency.  I have migraines, hearing and vision changes, heart palpitations, spiking and falling blood pressure, some loss of sensation in arms and legs, problems with balance, problems with memory, poor emotional control, and more.  It is really something.  There is no nice neat diagnosis and those that seemed almost sure to be it vaporized under testing.  We have looked at everything from simple nutrition to cancer and everything inbetween.  They have eliminated things like lyme disease, hepatitis, lupus, rhuematoid arthritis, diabetes, thyroid, and heart disease.  Now we are looking into weirder things.  I have a diagnosis of fibromyalgia that I am not willing to accept because my symptoms began to fall out of the parameters of even that vague diagnosis.  I also have a SEVERE vitamin D deficiency despite extreme attempts to raise it.

That's the short version.  Thanks again for all the help!  I am well on my way to developing a plan.

lovingpet

The Vit D can cause a lot of conditions (I had a level of 8 and after taking it for a few weeks my feet and knees stopped hurting).  But have you had a brain MRI or spinal tap?  A fair bit of your symptoms sound like pseudotumor cerebri (benign intercranial hypertension.).  Spinal tap is definitive, MRI can rule out the weird stuff like Arnold-Chiari Malformation.

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RE: Doing Something Stupid Intelligently - 2/18/2009 4:41:02 PM   
lovingpet


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I had a brain MRI about a year ago that was normal, though inconclusive as far as MS.  I doubt they were looking for much else.  I would like to get one done at the university and have a consult with a neurologist there.  No one has done a spinal tap for any reason.  Something to consider.  Thank you!

As for the Vitamin D, this is the 3rd aggressive round of treatment and they still haven't gotten it over the halfway mark.  I haven't had a test yet on this round, so we will have to see how it goes.  I am not improving, however.

lovingpet

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RE: Doing Something Stupid Intelligently - 2/18/2009 4:49:28 PM   
Lockit


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What neuro symptoms are you having besides the migraines?

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RE: Doing Something Stupid Intelligently - 2/18/2009 5:18:20 PM   
lovingpet


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Numbness and tingling in one of my legs and in my hands, memory problems, balance and coordination problems, emotional instability, vision and hearing changes.  Frustrating and restricting.

lovingpet

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RE: Doing Something Stupid Intelligently - 2/18/2009 6:29:08 PM   
angelikaJ


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re: excercise... can you get a referral for PT?

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RE: Doing Something Stupid Intelligently - 2/18/2009 6:40:38 PM   
lovingpet


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I was in pt for a long while, but couldn't afford it anymore.  Thinking something along the lines of water aerobics would be handy for my condition.

lovingpet

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RE: Doing Something Stupid Intelligently - 2/18/2009 8:01:37 PM   
Kalista07


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Has anyone checked Your cortisol levels? Just a thought. You might check some of this information out: 

http://health.yahoo.com/hormone-diagnosis/cortisol-in-blood/healthwise--hw6227.html

Kali

< Message edited by Kalista07 -- 2/18/2009 8:14:46 PM >


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RE: Doing Something Stupid Intelligently - 2/19/2009 5:36:55 AM   
lovingpet


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Cortisol has been the current topic of interest.  Blood level after the proper testing was normal.  (TMI time)  urine levels are high.  I am still waiting to hear what this means and what the next steps will be. 

lovingpet

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RE: Doing Something Stupid Intelligently - 2/19/2009 4:02:01 PM   
lovingpet


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Spoke too soon.  The latest set of urine cortisols were normal.  Back to square one!

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RE: Doing Something Stupid Intelligently - 2/20/2009 1:24:17 AM   
Maya2001


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Looking at the symptoms they are mostly related to upper body

and enough could possibly be explained by a function problem with  the vagus nerve   which starts in the  brain and weaves it way through most of the major organs

it can affect blood pressure, it can change the heart rhythm , it can result in fainting,  it can be reponsible of possible depression, anxiety, epilespy, it can affect the digestive system,

Vitamin D malabsorption problems - People who have undergone resection of the small intestine are at risk for this condition. Diseases associated with vitamin D malabsorption include celiac sprue, short bowel syndrome,37 and cystic fibrosis.38

Medications - Some medications are associated with vitamin D deficiency. Drugs such as Dilantin, phenobarbital, and rifampin can induce hepatic p450 enzymes to accelerate the catabolism of vitamin D.

so I did a search of vagus nerve , celiac disease and find it can tie in (the symptoms of celiac  disease vary greatly from person to person , so you could have even though my not be having  similiar symptoms http://www.celiac.com/gluten-free/index.php?showtopic=17892

quote:

Later the two nervous systems are connected via a
cable called the vagus nerve. This nerve meanders from the brain stem
through the organs in the neck and thoric and finally ends up in the
abdomen. This establishes the brain gut connection. So it is from a
correctly functioning gut that we enjoy neurological, psychological
and immunological health.


http://www.celiac.com/gluten-free/index.php?showtopic=17892 

the vagus nerve also controls the gastric system  so could play a role in celiac sprue

so your doctor may need to consider calling in a neurologist to see if  there is damage or a mal funcunction  of the vagus nerve


I have a tumor that is irritating my vagus nerve which is resulting in heart problems and other stuff, so I did a bit of online digging to see if it might apply to more of your symptoms

but it would at least tie the majority of your symptoms together


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RE: Doing Something Stupid Intelligently - 2/20/2009 7:37:16 AM   
lovingpet


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Thanks Maya!  I am keeping track of all the things I need to discuss with the docs as soon as I can get in.  I know they tested for celiac disease a couple of months ago and it was normal.  How do they test the vagus nerve?  I have had nerve conduction studies done both on one of my arms and on one of my legs.  My legs are quite weak and I have loss of feeling, though not the "usual" tingly numbness I have other places.  They just become not there so to speak.

It is a lot to speculate on and I appreciate everyone's input.  As for the original issue, I have someone watching very closely to make sure I am eating enough and the right things.  I have started a water aerobics class and will see how that goes.  I am sore as all get out after this first session.  I have been more fatigued than usual ever sinces starting this yesterday.  I will give it time and see if it gets turned around. 

Thanks again to one and all!

lovingpet

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RE: Doing Something Stupid Intelligently - 2/20/2009 8:23:57 AM   
KatyLied


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Pet, there are exercise videos on-line and I'm not sure how much you know about exercise, but it's really important to warm-up and cool-down.  Many people tend to forget those 2 important parts of a workout.  It helps prevent a lot of soreness.  But I firmly believe, no pain - no gain, I want to have some soreness to remind me of my hard work.

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RE: Doing Something Stupid Intelligently - 2/20/2009 8:36:05 AM   
lovingpet


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The program I am using is facilitated by an instructor and includes proper warm up and cool down, but I am more than just a little sore today.  I will be honest that I pushed very hard during the class and am likely paying the price.  No pain no gain is something I believe too.  Being able to stand up the next day is really not optional though.  LOL 

lovingpet

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RE: Doing Something Stupid Intelligently - 2/20/2009 9:24:33 AM   
KatyLied


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It's always easier to start out slowly and add more repetitions.  It will also make you feel better when you exceed your goals.  You can always add more it you feel you aren't being challenged enough.  And if it gets difficult in the middle of an exercise, just keep moving your arms/legs, even if it's a simple march or walk.   

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