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.

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/#

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

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

As always with these sort of things, you either have faith in the establishment or not.

Statistics can prove anything, depending on where you start from, etc. Personal conviction can override that common sense.

However, the establishment (maybe pharma influenced) says that statistically there is no evidence of Vit D helping against cancer.
On the other hand, keeping your Vit D levels up (so long as you don't overdose) is not going to hurt you, and is going to make you healthier. If it also helps against cancer... that is a plus.

Hi JulieJayne, how did your appointment go?

Disasterous!

He suggested that 800 iu Vit D would put that right :eek: He suggested that Vit D deficiency was the cause of ALL my problems. I pointed out the Diplopia. Oh, that must be a seperate issue... see an eye doctor!

My partner asked about seronegative MG? He said that was only a possible if there was a clinical diagnosis. And for him that meant Ptosis and Binocular DV.

So weak leg muscles...can't be MG. Lack of facial expression... can't be MG

We asked how it was possible that Mestinon reduced the symptoms so dramatically. "Don't know, can't explain that. But it is not Myasthenia."


On the positive side? He said keep taking the Mestinon if it helps, and yes increase it as much as you like it can't do any harm :confused:.

Sorry it went so bad :hug:
Was this a neurologist? Is he familiar with MG?

Well, maybe it's a good thing to see an eye doctor. Sometimes if we/they (patients and docs alike) focus to much on one thing, there isn't much room for anything else.
If this doctor sees something he/she recognises as MG, you can take that back to your neurologist. Or a new neurologist if that is a possibility.

One thing I do believe in though, is that if a patient has problems that have a significant effect on daily life, it's up to the docs to find out what the cause is.

I do not know if Mestinon working is only possible if you have MG.

It's hard if you're seronegative that's for sure (I don't know if you are of course)

Just to let you know, I did not have any ptotis the first years of my disease and I am sero positive for multiple antibodies. My ptosis only started after a severe exacerbation.

Hope the vitamin D helps.

Was this a neurologist? Well he claims to be. :rolleyes: In fact he is THE MG specialist of the Netherlands! He is in charge of major European wide MG projects! He leads the MG unit at a leading Teaching hospital.

Heaven help us all if this is the level of expertise!

I have already seen a Neuro-ophthalmologist, and whilst I might go back and see them again, it seems pretty much pointless, as they will not recognise Bilateral Monocular Diplopia, let alone a variable version thereof. Of course if they won't consider it possible, they will NEVER find it because they just shut their eyes.

Yep, I used to believe that too. But it appears not to be true. Instead if the docs can't fit you into a convenient box on the computer, they have invented a new one... it is in your head!!!!

Unless I can think of some other way to get them to pay attention, it seems that I simply have to wait for several years until I have Ptosis or Myasthenic Crisis. Otherwise I am at a dead end...:deadhorse: