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You aren't going to believe it, who woulda guessed, My Dx is in
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You aren't going to believe it, who woulda guessed, My Dx is in

Like my title says, it's almost crazy what has turned up.

It turns out I have severely low Vitamin D. Lol, all the years, and it's just a vitamin deficiency. I see that, like 85% of U.S. citizens are deficient. I never would have guessed that this is what is causing all my problems.

So, I'm on a Mega dose of Vitamin D. I want to be mad at the doctors I've seen in the past, trying to figure out what was wrong, but I just cannot be. It seems it goes misdiagnosed all the time. Thank goodness that my Neuro was so thorough. I'm still scheduled for my Nerve tests on Thursday, to ***** the damages. It seems like my chances for a decent recovery are good so far.

All this news, and you know, I'm still gonna hang around and support, and bug you all.

I wish you all a truly happy and symptom free weekend.
Big hug to you all for your being there
Johnny D.
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20 Comments Post a Comment
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147426_tn?1317269232
I hope that this really is the answer for you.  I have not read anything about the condition of Vitamin D Deficiency causing a known syndrome and group of symptoms, so this is new to me.  Almost all of us with MS have Vitamin D deficiency - some severe.  It would be interesting if this is indeed another MS Mimic.  I'm a bit doubtful, but I will try to look up some science to it.  

I really hope that a few months will see you turning around.

Please stay with us so we don't lose a friend and so you can report your progress!

Quix
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279234_tn?1363108849
I'm glad they did find that you were vitamin D deficient. I am, or shall I say, was too. Mine came in at a measly  8.3. I'm on a vitamin D supplement and I have reached normal levels now after several times of upping my dosage and taking a supplement for a year now.

Even though I was so deficient, and I am now in normal levels, I still suffer from symptoms that I did before I started the vitamin D supplement. I do hope, as Quix stated, that this is the answer for you. Most of the things I've read about vitamin D deficiencies in adults have to do with, bone thinning, muscle weakness and pain, a low immune system, and a possible connection to cancers and bringing out auto immune responses. No spasticity has been ever listed.

I had a dietitian send me info on how there is a connection between vitamin D deficiencies and people who have MS or an auto immune disease. It seems that they have a greater chance of having a vitamin D deficiency than the average population.

I really do hope that this is your answer, and there is an improvement in the way you feel. I did feel a little better at first when I did take the supplements, but soon went back to my normal symptomatic self. I'm not telling you this to discourage you in any way, but I wanted to let you know what I went through already, going from a really low level of vitamin D to normal levels. Not much difference.

Here is some info that the dietitian sent me on vitamin D foods:

Vitamin D Foods
Bet You Didn't Know
About This One

Unfortunately Vitamin D foods are rare, and there are only a few good Vitamin D sources to come by at all.
Really the only significant Vitamin D sources worth discussing are the sun, Vitamin D3 supplements and fish.
There are no fruits or vegetables that contain an amount of Vitamin D that would be considered significant.
However there are a few other foods with Vitamin D -one of which that you may be surprised at. I know that I was!

Vitamin D foods

Vitamin D food sources definitely exist, although if you have read the Vitamin D requirements page, you will quickly realize that it would be very difficult to get all of your Vitamin D requirements through foods.
These few sources are really the only significant sources of foods with Vitamin D. There are a few others, but they have so little Vitamin D that that they are not worth discussing.

Cod Liver Oil
Cod liver oil has a long history of being a highly nutritious food. From the 1800's and into the mid 1900's, mother's would regularly have their kids line up to get a spoonful of cod liver oil every day.
Although it was only a "folk remedy" and the mothers couldn't say exactly why it was good for their kids, we know today that it was a pretty good idea.
On the Vitamin D facts page, we discussed the potent effects that Vitamin D has on the immune system and how it prevents colds and flu.
Cod liver oil also is a rich source of Omega 3 fatty acids. Nutrients that most people in the west are severely deficient in.
With about 400 - 500 IU's per teaspoon (depending upon the manufacturer), that's a significant amount of Vitamin D.
Unfortunately, cod liver oil also contains Vitamin A.
And to get a significant dose of Vitamin D, you would have to consume a large amount of Vitamin A as well. Vitamin A has an RDA of 2,300 IU/day for women and 3,000 IU/day for men.
So if you choose to use cod liver oil to help you supply your Vitamin D requirements, you would quickly become Vitamin A toxic if you try to get the Vitamin D doses recommended by most researchers.
Therefore, Vitamin D researchers are suggesting that you do NOT take cod liver oil.
Cod liver oil should not really be treated as a Vitamin D food, but as a Vitamin A supplement.

Eggs
Egg yolk is another Vitamin D food.
Each yolk contains about 20 IU's of Vitamin D.
That's not nearly enough to count on as a significant food source of Vitamin D

Fish
Fish are a good natural source of Vitamin D.
But only FATTY fish; salmon, sardines, makerel, and herring are good sources of vitamin D.
And a serving will always vary significantly due to the fat content of the fish, but you can estimate that a serving of one of these fish can get you between 200 - 1200 IU's per serving.
Fatty fish also contain the Omega 3 fatty acid's that we so desperately need in the west, so these are great dietary choices.
But unless you eat a lot of fish, you're probably not going to meet your Vitamin D requirements. You also risk higher mercury exposure when you eat large predatorial fish, so you need to balance out that risk as well.

Milk
We think of milk products as good Vitamin D food sources, but that is only because they have been fortified. Most milk products tend to have about 100 IU's per serving, so they may not even be the best Vitamin D sources either.
The issue of milk is a WHOLE discussion in itself. Milk is a VERY frequent allergen that many people don't even know they are allergic to.
This low level allergy could even be contributing to many chronic diseases.
There is debate about whether pasturization and chemicals like rBST and antibiotics that are given to cows have made standard milk products unfit for human consumption anyway.
So, think critically about what you are putting in your body when you use milk to provide nutrients like Vitamin D and Calcium. They may not be the great sources that we have been led to believe.

The Surprising Vitamin D food

If you have read this far, you know that not many foods are great Vitamin D sources.
But there is ONE that actually IS a good Vitamin D food source, and I'm sure that it will surprise you.
Mushrooms!



Yep, mushrooms can be a GREAT Vitamin D source under the right circumstances.
Unfortunately, these circumstances are often not met - but the good news is that you can actually create those circumstances.
Mushrooms, like us, photosynthesize Vitamin D from the sun.
Unfortunately, farmed mushrooms are grown in the dark.
Wild mushrooms, however get some sun exposure and have a certain amount of Vitamin D.
A study done on volunteers who ate wild mushrooms every day at lunch for 3 weeks showed that this Vitamin D gets absorbed and so is actually one of the few very good Vitamin D foods, and the only vegetable with a significant Vitamin D content.
How much Vitamin D do mushrooms have?
Wild mushrooms have about 400 - 500 IU per serving.
Pretty soon, however, you may see Supermushrooms in the supermarket. These will be mushrooms that have been exposed to UV light either during or after harvest.
These mushrooms may have up to 2500 IU's per serving! Wow!
If you can find sun dried mushrooms, this would be another great source of Vitamin D.
If you can't get wild or sun dried mushrooms and don't want to wait for Supermushrooms, theoretically you should be able to make your own Supermushrooms by sitting store bought mushrooms out in the sun or under a UV light for 5 to 10 minutes!

So as you can see, there are not many good sources of Vitamin D foods. Really the best and cheapest source is mild exposure to sunlight on a regular basis.
If this isn't possible, it's a good idea to talk to your doctor about supplementation because getting your requirements through Vitamin D foods may not be realistic.




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279234_tn?1363108849
I'm not sure if you wanted this or not, but here is the other document that the dietitian sent me on the Vitamin D deficiency and MS connection:

MS and Vitamin D
What’s the Connection…

MS and Vitamin D Deficiency are connected together.
Unfortunately, too closely connected.
Multiple Sclerosis is a devastating neurologic disease that affects millions of people. I’m only going to be discussing the link between MS and Vitamin D, but not the disease itself. To learn more about Multiple Sclerosis, otherwise known as MS.
What is Vitamin D?
What is Vitamin D? You might think that you know the answer, but you’re in for a surprise about the answer to "what is Vitamin D?"

Vitamin D is really not a vitamin at all!! It’s just convenient for us to think of it as a vitamin, but it is really a hormone. And hormones are EXTREMELY important regulators of bodily functions.
Vitamin D:
• controls calcium metabolism
• regulates the immune system
• controls the expression of over one thousand genes
How does that relate to MS and Vitamin D?

Well, it’s been long known that people in more Northern climates have higher incidences of Multiple Sclerosis, but it has long baffled researchers as to what the risk factors are that make an individual susceptible to getting MS.

It didn’t seem to run in families, so what could it have been? Where does the theory of MS and Vitamin D deficiency come into play?

One thing that stuck out in the research was that most people with MS generally had a previous serious infection
such as the Epstein- Barr virus or measles.
Interestingly, for a long time it was even believed that MS was a communicable disease because of the way “epidemics” of MS would strike in certain areas all at the same time.
Now they were getting somewhere. It makes sense that the immune system was stressed after a previous illness and was a factor in triggering the autoimmune disruption.

But there was still something missing. Why didn’t other people with similar illnesses develop MS also?

Some important information came in the 1960’s when a neurologist and researcher named Dr. Walshe made the observation that MS was more prevalent in areas with the least amount of sunshine.
Unfortunately, no one paid any attention to his observations.

But 50 years later, we are again realizing the implications of this fact. It makes sense that Vitamin D deficiency is the key missing ingredient because Vitamin D is an extremely important immune system regulator.

This also explains the ‘epidemic’ theory of MS because Vitamin D levels tend to be similarly low in people of the same geographic regions at the same time.

Vitamin D deficiency causes dysregulation of the immune system that can lead to an improper immune response –especially after the immune system has been stressed to the brink by a previous infection.
Voila! A theory about Multiple Sclerosis and Vitamin D deficiency at last!

“Prevention of MS by modifying
an important environmental factor
(sunlight exposure and vitamin D level)
offers a practical and cost-effective way
to reduce the burden of the disease
in future generations”
-Dr Abhijit Chaudhuri
- Institute of Neurological Sciences, Glasgow, Scotland

Too bad that no one has been paying attention while new Vitamin D research has been taking place that is giving more and more weight to this theory.
And most people are still being diagnosed with MS without any thought to their Vitamin D levels.



That doesn’t prove that there is any connection
between MS and Vitamin D

While it doesn’t prove that there is a connection, there is other Vitamin D research that adds a lot of weight to the theory that Multiple Sclerosis and Vitamin D deficiency are linked:

1) Scotland has the highest incidence of MS in the world, yet people of Scottish descent living in sunny areas of Australia and India have much lower incidences of MS

2) On a related note, people born in Scotland who move to sunnier areas have a much lower incidence of MS than family members who remain in Scotland

3) People who have MS are much more likely to have worsening symptoms or relapses in the spring when Vitamin D levels are at their lowest

4) Outdoor workers who get more than average amounts of sun exposure are much less likely to get Multiple Sclerosis

5) Large studies have shown that people born in the late spring, when Vitamin D levels are at their lowest, are more likely to develop MS as adults

6) A large study that had nurses take a multivitamin with 400 IU’s of Vitamin D per day had a 40% less likelihood of developing MS than those who never took vitamins

7) Several trials of people with MS who were given varying amounts of Vitamin D had improvement in their symptoms and fewer relapses

Again, while this doesn’t PROVE that Vitamin D deficiency causes Multiple Sclerosis, Vitamin D researchers are convinced that MS and Vitamin D deficiency are indeed associated.

So what do you do to prevent
deficiency of Vitamin D and Multiple Sclerosis?
MS is on the rise in many countries, especially those in Northern Countries like Scotland and Canada. And it is particularly on the rise for WOMEN in those countries.
Theories abound, but the one that makes the most sense is that we are just spending a lot less time outdoors and in the sun. Women tend to spend even less time outdoors than men, and when they do they often wear makeup that blocks the UV rays required to make Vitamin D with exposure to the sun.
But even if there were not large bodies of Vitamin D research relating Multiple Sclerosis and Vitamin D deficiency, there is plenty of evidence linking Vitamin D deficiency with many many other diseases.

Sun Exposure to the Skin is the cheapest and most efficient way of getting adequate amounts of Vitamin D. Full body exposure to the sun until JUST BEFORE the point of getting any amount of skin pinkness will provide close to 20,000 IU's per day.
Unfortunately, this is not available nor is it practical for everyone, so supplementation with this readily available and inexpensive supplement is the next best way to prevent both MS AND Vitamin D deficiency.

If you HAVE Multiple Sclerosis already, it is IMPERATIVE that you have adequate Vitamin D levels in your blood!
There have been Vitamin D research studies showing that supplementation with 10,000 IU’s of Vitamin D per day has actually reduced the number of lesions on the spinal cord!!
But in order to optimize your Vitamin D blood levels, you MUST have regular Vitamin D testing done with the help of your doctor.
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1312898_tn?1314571733
I'm glad to hear that you are getting answers.  I hope that the Vitamin D ends up being the totality of your issues.  It will certainly help you feel better and so wonderful that he thinks the neuro issues will be resolved when the vitamin levels go up.  

Let us know how your other tests come out.



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572651_tn?1333939396
hey Mutt, I'm so glad to hear you are planning on sticking around here.  I think you are a great addition to the mix here and you obviously have learned a lot on your journey.

Like Quix, I am puzzled by this certainty that your doc has proclaimed about the VitD deficiency and I want to know if they up your D if you really do shed all these symptoms.  So, I guess we are saying we want you to be our lab rat.  Are you game????  Please stick around and join the chats and keep us updated on your progress.

be well,
Lu
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428506_tn?1296560999
Slightlybroken has provided far more detail than I ever could (thanks for that, good reading!).  While I don't have additional info, I have some experience with low D so I'll throw that in here.

I also had single-digit vit D, right about the same level as slightly.  With a lot of steady supplementing, I'm up but still at the low end of normal most of the time.

I have Lyme disease, which can cause a lot of strange neuro symptoms, some of which are like those that can happen with MS.  There are theories that chronic infection can be a cause of vitamin D deficiency, but as you know it's also just a really common issue in North Americans.  

I did note some improvement in certain symptoms once my D level got up higher.  I get blood work done every month or so as part of monitoring during my treatment for Lyme, so I have a lot of "data points" to determine correlation between my D and symptoms.  In particular, the extreme heaviness in my limbs (that feeling of having legs dipped on concrete) usually happens less and is less severe when I'm being good about taking my supplements.  

I don't know for sure (nor to my doctors) if the Lyme causes low D, or if I'm just prone to it and the deficiency aggravates my symptoms.  Either way, for me, while supplementing D helps, it's only a piece of a larger puzzle.

As others have said, I do hope you see widespread improvement, but you owe it to yourself to stay vigilant in case your deficiency turns out to be secondary to a root cause, or if supplementing doesn't restore your health.  Of course, any relief is a good thing when one is up against an unknown agent, and I wish you luck in feeling better soon.
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1260255_tn?1288658164
Wow, did you get some pretty comprehensive answers to your post.

I'll chime in with others who have sent their thoughts that this dx is in fact the root of your problems.

You said you will be taking Mega doses of D. Will your levels be monitored? Vit D is one that can accumulated in the body, with overdose possible.

Hope you start feeling better soon!

Audrey
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911669_tn?1294102788
Johnny,

I pray for you that this works.  I agree with Quix and Lulu.  

If your symptoms do not go away or improve, I would stay on your pursuit.

The best to you!

terri
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Avatar_f_tn
I'm an undiagnosed lurker and guess what? I was just diagnosed with a Vitamin D deficiency and also a chromium deficiency. I will be taking mega doses of vitamin D -- I'll be monitored regularly by the endocrinologist. I'm a bit skeptical about this accounting for my symptoms which include walking difficulties as well as systemic problems. I also have a pinched nerve in my back, a damaged muscle in my left leg, lumbar spinal stenosis (2 areas), and multi-level disc AND UBOs on a brain MRI (no lesions on my cervical spine).

Here's hoping vitamin D resolves both our problems!!! Wishing you the best.
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1140169_tn?1370188676
Johnny, I really hope this is the answer for you!

You too, Phyllis!

The best of health to you both!

Keep us informed

Mike
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1216899_tn?1288573925
I definitely understand what all of you are talking about. Maybe I'm quick to jump to "this is my cure". I'm just being optimistic, because I really want to believe that I can have some what of a normal life in my future. However, I am a realist as well, and know that nothing may change, or may get worse. Perhaps the Neuro is spot on, I don't know, but I will play these cards for awhile, until I need to call for a re-deal.

Thank you all for so much information on this matter, it is very insightful and gives me some thinking and researching ideas, to follow.

Also, I am sorry that I haven't gotten into much chats here. I honestly felt like I was butting in, without not knowing how any of you feel. I know that when I'm asked something by someone, that has no idea what I am experiencing, at work, that I feel that they are questioning the validity of my illness. Hehe, it does get me upset. I just didn't want to give off those sorts of feelings to anyone, I see that I'm just a fool in that matter, and will be happy to be more involved.

I truly consider you all dear to me, and appreciate your wisdom, and just knowing you. Thank you my friends
Johnny
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751951_tn?1406636463
Johnny, we also pray for full resolution of your issues, whether this dx is the whole problem or just one manifestation of it.  We also pray that we get more opportunities to chat.

Peace & blessings to you & yours.
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279234_tn?1363108849
I hope with everything, this is your answer. See how it goes. It's worth a try, and tell us how it's all working out.

Take Care :)
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1207048_tn?1282177904
Johnny,

I hope this is the answer!! Please keep us up to date on how it goes! Good luck!

I hope you are enjoying your weekend :-)
~Jess
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Avatar_f_tn
Doggone it.  Go ahead and be optimistic.   :)

And please keep us posted on your progress.
I am very interested!


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1318483_tn?1318350782
Good morning, Johnny!  I am so glad that the docs found an answer for you!  So, your MS diagnosis was taken away?  Had you had lesions on MRI's?

Have you seen a difference yet since starting on the mega doses?

Hugs to you, my friend-

Addi
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198419_tn?1360245956
Wow am I behind!

That's your ticket? More D?  You feel any change w/the megadosing?

Oh, you are very much a part of us now - we'll hunt you down! If you even think about leaving!

-Shell



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293157_tn?1285877039
I hope this Dx is what is needed to help you.. I'm glad your sticking around with us and let us know how you feel with the Mega Vit Ds... I'm one of the people that just can't see it, but ??  I hope it works out for you and anyone that gets that Dx..

let us know when and if you symptoms improve OK.. I'm curious to see if it helps.

how is your Vit B12... they say that it it's low you could have symptom too??

take care
wobbly
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Avatar_m_tn
I have a dx of SPMS, the docs say their is nothing that can be done but I found taking 16,000 I.U. Vit. D3 has helped a lot. I was stuck in an electric wheelchair, with use of only one arm. I can now walk about the house at least and have use of both arms most of the time. I do still get flare ups, my legs can sometime hurt a lot and feel like a ton of bricks, but it is still a lot better then it was, and a whole lot better then doing nothing. I am now going to start 40,000 per day, I don't think I have a lot to lose by trying it. I posted this on another thread so I will add here that it takes about 2 years for the D to actually make a big difference. I have been taking the 16,000 for about 5 years. It is all but impossible to get enough D in Canada, and is impossible all year round. One major problem is that some doctors suggest no more then 1000 IU, that is no where near enough unless it is summer and you are a tanner. Otherwise, the further north the less D you will get even if you are in the sun, and even that depends on the time of day.
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Avatar_m_tn
http://www.youtube.com/watch?v=erAgu1XcY-U   watc this, it s also in english for more informations, write me at lacra_l***@****
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