Terrified!! First time here

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

Terrified!! First time here

Postby AlN » Sat Nov 19, 2016 11:28 am

For starters I have had type1 diabetes for 23 years. I am 46 now. I have been on disability for a combination of the diabetes, severe obstructive sleep apnea and what had been diagnosed as neuropathy. Even before I was taken off of work I suffered from constant pain and stiffness all over but especially in my arms and legs. I have also been suffering from constant severe fatigue. For a much longer time I have suffered from anxiety and depression which I never talked about. I have also become really isolated, it seems I always find a reason to tell myself that people either don't like me or just don't want to be around me. I have never even concidered ms. However yesterday with my appointment with my neurologist. I did some test which basically consisted of walking and motor function. He then told me he wanted me to get an MRI of mr brain. When I asked him what he was looking for he said scare tissue. When I came home and started researching different things tha would cause scare tissue I came across ms. The more I have read the more I see it as fitting all of the symptoms. I haven't lost sight yet but do suffer from headache and blurry vision at times. Not to mention have trouble with my labido. I have myself convinced that that's what's going on. Am I being paranoid or does anyone else see a fit. I can't get my MRI until Monday. Any input appreciated.
AlN
Newbie
 
Posts: 3
Joined: Sat Nov 19, 2016 11:03 am

Advertisement

Re: Terrified!! First time here

Postby AlN » Sat Nov 19, 2016 12:00 pm

I did forget another thing I have been struggling with for some time and that is memory and getting confused. Also I have had tons of blood work vitamin d among many other my nuerolgyst said it was normal my endrochronolgyst keeps saying there is many levels of normal and has me on 5000 mg a day.
AlN
Newbie
 
Posts: 3
Joined: Sat Nov 19, 2016 11:03 am

Re: Terrified!! First time here

Postby lyndacarol » Sat Nov 19, 2016 1:31 pm

AlN wrote:Also I have had tons of blood work vitamin d among many other my nuerolgyst said it was normal my endrochronolgyst keeps saying there is many levels of normal and has me on 5000 mg a day.

Welcome to ThisIsMS, AIN.

The symptoms you describe are consistent with MS, but they are common to many other different conditions, as well. Since there is no definitive test for MS, but there are tests to rule out the other possibilities, these tests must be done before the MS diagnosis can be considered.

In my opinion (I have no medical background), it seems logical to begin with the most likely. Have you had blood tests recently to rule out nutrient deficiencies? What is your level of vitamin D (measured by the "25-Hydroxy D" test)? Have you been tested for a possible vitamin B 12 deficiency? Tests for magnesium, for zinc?

If you have (or can get) the actual test result numbers for these nutrients, would you share them with us?

As for vitamin D, your neurologist said it was "normal," but it is possible that he was using an outdated reference range. A consensus of vitamin D experts at GrassrootsHealth (http://www.grassrootshealth.net) recommends that the vitamin D level be at least 40-60 ng/mL (which is 100-150 nmol/L in Europe and Canada). There are neurologists who recommend 80-100 ng/mL for patients with neurological symptoms.

If your endocrinologist has you taking 5000 IU (International Units) of vitamin D a day, please be aware that D2 is not as effective as the D3 form.

Also, according to vitamin D expert Dr. Robert P Heaney of Creighton University, Omaha, a normal, healthy human being uses 5000 IU per day. This amount may not be adequate to correct a deficiency quickly. After 3-6 months of supplementation, the vitamin D level should be tested again to see if you are responding to that dosage.

As for diabetes...

Vitamin D and Diabetes
Teresa Martin and R Keith Campbell
http://spectrum.diabetesjournals.org/co ... d-shared=1

"Renewed interest in vitamin D, the so-called “sunshine vitamin,” has occurred recently because it has been linked to everything from cancer and heart disease to diabetes.1 Research studies continue to pour into the literature stating that vitamin D is a superstar when it comes to health. However, most of the research is based on observational, epidemiological studies, which are important for generating hypotheses but do not prove causality."

"There is growing evidence that vitamin D deficiency could be a contributing factor in the development of both type 1 and type 2 diabetes. First, the β-cell in the pancreas that secretes insulin has been shown to contain VDRs as well as the 1 alpha hydroxylase enzyme. (Bland R, Markovic D, Hills CE, Hughes SV: Expression of 25-hydroxyvitamin D3-1 alpha-hydroxylase in pancreatic islets.) Evidence indicates that vitamin D treatment improves glucose tolerance and insulin resistance."
Last edited by lyndacarol on Sat Nov 19, 2016 1:58 pm, edited 1 time in total.
User avatar
lyndacarol
Family Elder
 
Posts: 3385
Joined: Thu Dec 22, 2005 3:00 pm

Re: Terrified!! First time here

Postby jimmylegs » Sat Nov 19, 2016 1:58 pm

hey there :) your endo's comment reminds me of this post
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17004.html
specifically
"The first thing to understand when beginning nutrition investigations, is the unfortunate language of the lab. Specifically, the term 'normal'.
The 'normal' range is often quite a broad range which in many cases includes both sick and healthy people.
There is a much smaller range within the normal range that can be described as 'optimal'."

the main point of that post is in its title: Step 1: Assess/Correct Your Nutrient Imbalances
it's intended audience in context is ppl who are planning surgery to correct blood flow issues, but the message applies to anyone with an array of physical, mental and/or emotional symptoms that don't necessarily trigger a specific dx with a medical doc.

if you look at the nutrients associated with diabetes, apnea, neuropathy, pain, stiffness, fatigue, anxiety, depression and cognitive function, you'll end up with a pretty short list of associated essential nutrients. often they correspond to ones we know societally we don't get enough of.
http://www.hc-sc.gc.ca/fn-an/surveill/n ... lt-eng.php
then it's a matter of checking the recommended daily amounts needed for each for an individual of your gender and age, and then you evaluate your diet to see how it stacks up. one important thing to remember is that the recommended amounts are generally considered a MINIMUM adequate intake, not a target to work towards but to exceed at the very least.

at a bare minimum, what you get out of this work is reassurance that you're doing everything perfectly right, all chronic symptom/issues have nothing whatever to do with diet and/or lifestyle, and things are properly in the docs' hands.
more likely, you find there's some room for improvement. sadly, clinical tests (or at least the way they are interpreted) aren't often sensitive (for single nutrients) or comprehensive (looking at ratios or interactions) enough to detect important nuances. so, it's a matter of working on diet. especially in the short term, chronic problems aren't generally going to turn around overnight. but starting to figure things out and take steps, gets you closer to healthy than not. sometimes people go for supplements to get a short term therapeutic boost or headstart, especially when things have been out of line for a long time. it can take a while to work through the details of what's most suitable for each person. baby steps, otherwise it can be overwhelming.

as for your d3, i'm assuming you mean 5000 IU of vit D3 per day, since 5000 mg = 125000 IU which would be a toxic dose. did anyone mention balancing your supplemental d3 intake with mineral cofactors?

if it's of any interest, here's a list of some of your symptoms, alongside nutrients i have personally used with success against the same
pain/stiffness - d3/magnesium
fatigue - iron
anxiety - magnesium/b12
cognitive - zinc
libido - zinc

that's an overly simplistic list, but those are the ones i personally consider pretty obvious 'go-to' solutions.

it's also well known that b6 an b12 are good for mood. i learned an interesting snippet in a tv show the other day, namely that low b12 can cause feelings of guilt. i had forgotten all about feeling exactly that, because it was so long ago that i started working on b vitamins. the show made me remember. so weird!

there are sooo many resources to help out if you're interested in learning more. if not, the docs will work you through the process, maybe slowly, but nonetheless surely.

there are loads of folks on here who can answer questions, whatever angle you pursue.

at the end of the day, it's not paranoid to start looking for answers, at all. the blurry vision aspect you're probably reading about is optic neuritis (by the way, also linked to zinc status).
speaking of which, note also from the link above that "If you have an MS diagnosis, you are likely to have a constellation of nutrient imbalances that have been extensively researched."
if you check that list, you'll find it's basically the same as for many chronic illnesses associated with developed countries. and it has a lot of similarities to the list of nutrients we know from research we're not getting enough of as a society (even though blood tests won't necessarily pick up the problem).
well that turned into a marathon, will leave it there and say take a deep breath, we all are familiar with the terrified feeling when something new and scary looms, and at the end of the day you have a lot of power and control when it comes to your health. the docs are only part of the picture. hope that helps :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11814
Joined: Sat Mar 11, 2006 3:00 pm

Re: Terrified!! First time here

Postby AlN » Sat Nov 19, 2016 6:49 pm

Thanks for all the info. Diet is something that I have been consentrating on. As it is one thing in my control. Yes it is 5000 units of d3. I'm also taking others inclunding b12. There has been more blood test than I can even begin to remember. I don't have any of the results though. I appreciate all of the input!!
AlN
Newbie
 
Posts: 3
Joined: Sat Nov 19, 2016 11:03 am

Re: Terrified!! First time here

Postby jimmylegs » Sat Nov 19, 2016 7:11 pm

would be good if you could get your hands on a copy of your test results! personally, mine have come in really handy :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11814
Joined: Sat Mar 11, 2006 3:00 pm


Return to Undiagnosed

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service