[juliejayne]

I have finally received the some of the results of blood tests done on the 13 april.

I still have not seen the results for MG antibodies. I expect the Neuro is keeping them to himself until I see him next.

BUT, the only low result that I can see is Vitamin D at 18 nmol/L.
Symptoms of Vit D deficiency include

Muscle aches and weakness (in particular proximal limb girdle)

But I can find no mention of double vision, no mention of fatigable muscle weakness, no mention of hyperventilation, no mention of Mestinon being used as a treatment.

Does anyone here know anything more about Vit D deficiency, and can it mimic MG, as I expect that that is going to be the course that the Neuro takes. I just want to be as prepared as possible.

[rockenmama]

Originally Posted by juliejayne

I have finally received the some of the results of blood tests done on the 13 april.

I still have not seen the results for MG antibodies. I expect the Neuro is keeping them to himself until I see him next.

BUT, the only low result that I can see is Vitamin D at 18 nmol/L.
Symptoms of Vit D deficiency include


But I can find no mention of double vision, no mention of fatigable muscle weakness, no mention of hyperventilation, no mention of Mestinon being used as a treatment.

Does anyone here know anything more about Vit D deficiency, and can it mimic MG, as I expect that that is going to be the course that the Neuro takes. I just want to be as prepared as possible.

During one of my exacerbations this year THAT is what my Vitamin D was at. I took the 50,000 once a week for I think 6 weeks. It didn't cause any of my MG symptoms, just made them MUCH worse. As far as I know the Vit D could cause weakness but not sure how much

Pam

[rockenmama]

Originally Posted by rockenmama

During one of my exacerbations this year THAT is what my Vitamin D was at. I took the 50,000 once a week for I think 6 weeks. It didn't cause any of my MG symptoms, just made them MUCH worse. As far as I know the Vit D could cause weakness but not sure how much

Pam

Just found out my numbers are back to 19 so back on 50,000

Need to find a way to get numbers high and stay high

[davew41]

Originally Posted by rockenmama

Just found out my numbers are back to 19 so back on 50,000

Need to find a way to get numbers high and stay high

I have posted many times on this forum about vitamin d3
first of all the 50K they gave you? **** CAN IT the 50k once a week pills from the DOC are vitamin D2, not what you want..

MY levels were Down a few years back, I did research on vitamin d3 it can help 28 different kinds of cancer as a matter of FACT 87% of breast cancer CAN BE ELIMINATED with vitamin D3.. don't let everyone tell you they get cancer or this or that because it is hereditary,, because in reality? grandma and mommy could also had a crap diet and have been low on vitamin D3.....

First of all think of a simple fact.most people that go outside do not get colds or fevers in the summer why??
hmm vitamin d3 absorbed via their skin
fall winter spring cold flu season..

Get the vit d 25 test done as I prezume you already have knowing your levels.

I get then vitamin d25 test EVERY 3 months..
I also take 6000 IU per day for over 4 years now yes 6000 not 600
My sons take 2000 IU per day and have had no colds and or flu in the same time frame.

I also have Lambert Eaton Syndrome (here they put us in the MG forums hence why I post here) in which 65% of people develop small cell lung cancer,, so far a little over 2 years and no lung cancer..

I actually had nodules on my lungs that Disappear from my cat scans

Bottom line my Cancer doctor and family doctor and neuro all told me with a chance of cancer,, get your level as close to 80 as you can

My level is 78.6 as of last check I simply every morning at 9 am take 3 2ooo IU gel caps and that is all.

With the lambert eaton and sometimes swallowing getting hard the gel caps are great i just pop them in my moth and chew them up

http://www.amazon.com/Nature-Made-Vi...in+d3+gel+caps

so that's a measly $13.00 for an 83 day supply there

it is the most cost effective thing you can do for your body

get your levels checked every 3 months and see where they are
again talk to your doctor
Also it fights Parkinson’s disease and stops it in its tracks My old boss just was diagnosed and his doctor told him to get a sun lamp asap.. he works inside all day , I got him on vitamin d3 daily and his doctor agreed as well..

there is a dramatically decreased incidence of a degenerative disease like Parkinson’s (67% lower risk) in people with the highest level of vitamin D.

http://www.pdf.org/en/statements_vitamind

http://www.parkinson.org/Parkinson-s...-and-Vitamin-D



http://www.medicalnewstoday.com/articles/273728.php

http://sciencenordic.com/cancer-pati...ls-live-longer

http://www.cancer.med.umich.edu/news...minD-011.shtml

https://www.vitamindcouncil.org/heal...ns/influenza/#

[juliejayne]

Thank you Dave, that is some of the clearest, most concise information that I have read.

[kiwi33]

Originally Posted by davew41

I did research on vitamin d3 it can help 28 different kinds of cancer as a matter of FACT 87% of breast cancer CAN BE ELIMINATED with vitamin D3.

I am curious about your evidence for this.

To quote from the Abstract of a recently meta-analysis of clinical trials looking at the possible benefits of Vitamin D supplementation:

"The effect estimate for vitamin D supplementation with or without calcium for [...] cancer (seven trials, 48 167 patients) [...] lay within the futility boundary, indicating that vitamin D supplementation does not alter the relative risk of any of these endpoints by 15% or more." The source of this quote is http://www.thelancet.com/journals/la...212-2/abstract .

What the authors concluded from their analysis was that vitamin D supplementation for 48167 (a big number!) cancer patients provided no statistically significant improved clinical outcomes.

Would you like to comment on this?

[davew41]

Originally Posted by kiwi33

I am curious about your evidence for this.

To quote from the Abstract of a recently meta-analysis of clinical trials looking at the possible benefits of Vitamin D supplementation:

"The effect estimate for vitamin D supplementation with or without calcium for [...] cancer (seven trials, 48 167 patients) [...] lay within the futility boundary, indicating that vitamin D supplementation does not alter the relative risk of any of these endpoints by 15% or more." The source of this quote is http://www.thelancet.com/journals/la...212-2/abstract .

What the authors concluded from their analysis was that vitamin D supplementation for 48167 (a big number!) cancer patients provided no statistically significant improved clinical outcomes.

Would you like to comment on this?

Sure most doctors are paid by big pharma hows that??


http://healthyprotocols.com/2_vitamin_d.htm

https://www.youtube.com/watch?v=9FMlQeH8RFA

https://www.youtube.com/watch?v=5Q7DdWBlHsc

https://www.youtube.com/watch?v=CAtsKU-FmvU

https://www.youtube.com/watch?v=DBaaByPnjuM


and loads of other places
hey? don't want to take it not my issue
I take mine and have had NODULES in my lungs disappear that is all the proof I need.plus my neuro and cancer doctor say TAKE IT

[davew41]

Originally Posted by juliejayne

I have finally received the some of the results of blood tests done on the 13 april.

I still have not seen the results for MG antibodies. I expect the Neuro is keeping them to himself until I see him next.

BUT, the only low result that I can see is Vitamin D at 18 nmol/L.
Symptoms of Vit D deficiency include


But I can find no mention of double vision, no mention of fatigable muscle weakness, no mention of hyperventilation, no mention of Mestinon being used as a treatment.

Does anyone here know anything more about Vit D deficiency, and can it mimic MG, as I expect that that is going to be the course that the Neuro takes. I just want to be as prepared as possible.

Get onto 6000 IU vitamin D3 a day not the d2 50iu as the other poster stated,

D3 level needs to be as close to 80 as you can get it

the only time to stop vitamin d3 is with cancer treatment
IT WILL NOT MAKE MG OR LAMBERT WORSE!!!
I have lambert eaton 3 years already
I take vitamin d3 6000iu yes 6000 not 600 per day
i get my level checked every 3 months
my current level is 78.6

d3 fights 26 different kinds of cancer
87% of brest cancer can be avoided with vitamin d3 almost 90% of breast cancer patients are LOW in vitamin d3
do some research
and just sitting out in the sun for 15 minutes a day does nothing you would need 4 hours in peak sun with 55% body exposed to get your daily ammount of vitamin d3..

i take 3 of these each morning and get m levels checked every 3 months
http://www.amazon.com/Nature-Made-Vi...vitamin+d3+gel
never had an issue
i don't get the flu and i don't get colds
neither has my 2 sons for over 4 years as they take 2000 i u each morning

[juliejayne]

Thanks for that. It seems that I will have to find some Vit D supplements, though I expect the Neuro or GP will prescribe them anyway.

But what causes such low levels? And what symptoms would that give? I expect the Neuro to blame many of my symptoms on the D deficiency.

Hey,
Just a little advice, do not start with 6000 IU vitamine D before speeking with your doc. It is not always safe. For example, it can cause kidney problems if you are sensitive to it. Only take extra vitamins you and your doc talked about.

I don't know anything about Vit D and MG, for years I take around 800 IU a day because I take prednisone. I don't know if it makes my MG worse.
My level is checked every year and stays ok.
My brother experienced some weird symptoms which turned out to be a severe vit D deficiency. He had to take a very high dosage for a few weeks, and after that he only needed 400 IU a day to keep it normal.

His symptoms were not at all comparable to my MG symptoms. Whereas his was an overall feeling of tiredness, weakness and feeling like he didn't sleep enough for weeks, mine is more pronounced,as in: you see my eye droop, my lack of facial expresssion, wobbly legs or the feeling you can't lift something.

His feeling was better described as "tired/lack energy and mine as "sick/muscle weakness".
About the cause, we don't know: he is young, healthy, gets outside a lot, eats butter (source of vit D).

Anyhow, your neurologist probably will prescribe them and maybe they'll help. If not, it's not that impossible to have both MG and a vit D deficiency, because the latter isn't that uncommon. Having vit D deficiency doesn't rule out MG.

Good luck