Wise advice needed
 

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

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

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 :hug:

low vit D3 levels are common sense Lack of sunlight on your skin in the peak hours of the day between 10 am and 3 pm summertime hours
working inside with a window open and sunlight in does NO good, also foods low in vitamin D under 30 is deficient and you are at 18? way low

on a sunny summer day with 40% of your body exposed and a nice afternoon walk you can get up to 40,000 IU into your system and have no ill effects for this person to tell you NOT to start with 6000 IU per day is bad
it will not hurt you have you ever gotten sick from a day out for a walk in the sun??? NO

unless you are going to drink 11 gallons of milk a day you are not getting your vitamin d3
here are some foods that contain some vitamin d3
http://nutritiondata.self.com/foods-...000000000.html

Davew41, Thanks.

I have been deficient for a long time, I guess so I will wait until I speak to my Neuro.

Oh, and by the way... strange though it might seem to you, I have often gotten sick from a day out in the sun!.... LOL! Honest.

Can't ignore this :cool:
My brother even often worked outside, it's not possible he didn't get enough sunlight.

Even though the vit D your body makes from the sunlight doesn't harm you, does not mean supplements won't. Mind, I'm not saying it will, but because vit D is a fat soluble vitamin, you don't just pee out what is too much. A wrong dosage may be harmful in people with kidney diseases, which can exist before noticing any symptoms. So, better check and talk with your doc, he/she may or may not advise you to take vit D, but that's up to the doc. He/she will also tell you your best dosages, which may be 6000 IU or something else.

What did you mean by getting sick in the sun? Because MG tends to worsen when you're warm, so if it's very obvious (15 minutes sunbathing means sudden weakness tha wasn't there before), that may be something to write down...
I get Lupus rash in the sun and extra weakness. Though I have no idea what happens now, because I avoid it because reasons above and Imuran and stuff.

Good luck at your appointment, hope it's soon?

Thanks Ravenclaw,

15 minutes sunbathing would be a killer for me... 5 minutes and I feel weak. I live in a flat now with very large windows East facing. In the summertime... like now until Autumn, I have to avoid sitting in the living room in the mornings... sunshine coming in will leave me weak for an hour or so. Not sure if it is the sunshine or the heat... probably the heat.

My appointment is June 1st.. so I will hopefully know more then.

Check out the Peripheral Neuropathy forum--a lady who was low in Vitamin D3 asked for some help in deciding how much she needed to take and MrsD responded.

She told her that the general rule for D3 supplements is 1000IU D3 daily for every 10 points you need to raise. So use a level of 50 as your goal. At 38, you may only need 1000 IU D3 daily.