MG Exacerbation
 

MG is still in high gear. Greater than usual ptosis, swallowing and breathing problems continue. Walking very difficult.

Went back to neuro because of increased breathing issues, and still have weakness in left arm.

Pushed up dosage of prednisone to 50 mg a day - after a week will start decreasing. :eek: WIDE AWAKE tonight. I wonder why............

If not better - or if I get worse, then it is IVIG. Had IVIG a few years ago with first and second MG crises. Same neuro then as now.

Neuro doesn't think the flu vaccine itself caused this acute exacerbation.

He thinks I had a "bad stick" ???? - and because I have lost so much muscle in my arms (thanks to MG) -
that is why I continue to have more than usual atypical upper arm weakness.
The pain and shock of that "bad stick" is what has caused MG exacerbation, per my neuro.

Thankfully my arm's strength is returning. Slowly, but surely. Sigh.......
I was beginning to be afraid of permanent loss of strength and use of left arm.

And my neuro, I can tell, is quite perplexed about all of this.
Me too........... :confused:

Gotta take this MG stuff one day, one hour at a time. This has been too scary - getting this close to another crisis.

Wahhhhh.......

I realize had taken my "stable MG" condition for granted..........:o

I want to get stable again. And this time, I will be grateful!!!

I never get the flu shot even though they want me to each year, I take 6000IU of liquid vitamin D daily and have not had the flu for the past 4 years, MY sons take 2000IU daily and also have not had any issues, plus vitamin D (3) had a lot of health benefits. think of this simple senario in the summer when we are out in the sun ( our bodies make 10,000IU of vitamin d3 in about 30 minutes) we do not get the flu..
a soon as it gets cold and we spend more time indoors ?? and we get less sun??
You got it flu..
do a little research on google about vitamin d3 and the flu and the benefits of it.. it is not marketed as they can not make any $$$ on a vitamin..

Vitamin D
 

Hi thanks, Dave.

Indeed, I do have diagnosed low vitamin D level. Dx'd by endo who has me taking 1,000 IU of D3 daily. WOW perhaps I should increase the dosage. Lowest level was 7 - latest test was 10.

He first gave me (RX) large dose - I believe it was 50,000 IU BIG pill. Which was very difficult to swallow AND made me very VERY ill. Hence, plan B is taking smaller dosage every day. (Smaller pill also). :)

Even though I live in sunny So California. Can't take the heat generated by the rays. Also, have been "inside" much more than "outside" - due to MG. :(

Endo says common with people with autoimmune illnesses to have D3 deficiency.

My neuro didn't say much when I told him endo had placed me on D3 - it almost seemed that he was a little skeptical about my need for the D3. However, my endo is highly respected doc here in So CA - and they are colleagues at large highly rated hospital. And endo has a couple of other patients with MG - one is wife of a local doctor. I trust endo very much and will ask endo if I can/should increase dosage at next appointment.

Verdict is now out about whether this flu shot which seems to have triggered MG exacerbation is going to be effective for me this flu season (first case of flu has just been reported in nearby city). :eek:

mrsD: I did get the manufacturer (Merck) and lot number - just in case. Thanks for the insight on the flu shot......

Dave is your liquid vitamin D - D3?? Do you mind mentioning manufacturer?

Thanks again for your reply.

In the mean time, I am feeling not so sunny in sunny California.

Thankful for pillows and laptop, which allow me to get online.

Oh.....and I need to thank my cat for her healing purrrrrrssssssss.
I do believe that even felines know when their "people" - are not feeling well.

(I used to always have a dog or two in household). :D

A Normal vitamin D25 test you are defficiant if you are under 30.. if you were 7 to 10? you are way to low, my doctors want to see my monthly vit d25 tests about 70 or 80

This big pill the 50,000 iu one to be taken weekly is d2 it is not D3 that we need I get my liquid vitamin d3 on amazon.com and i take just a few drops it is in olive oil and goes down very well daily.

Liquid Vitamin D 3 - 2,000 IU per drop - 900 Servings - High Potency
by Seeking Health search that on amazon.com

Doctors almost never care to much about nutrition and common sense most of them are pushers for drug companies treating the symptoms instead of the cause..

I have a thyroid issue and for many years.. the thyroid doctor said no IODINE NONE AT ALL... well for 4 years we were upping the thyroid meds to get my levels down to normal.

No matter what he tried the lowest he could get my thyroid down to was a 30 ( normal is a 4.5)

I did a little research and found out that IODINE makes the thyroid work, i purchased centrum chewables and they had 100% usda allowance of iodine in them.

2 months later my thyroid with the SAME DOSAGE of thyroid meds was down to a 5.6 with no other dietary changes..

DR was at a loss, I said IODINE MAKES THE THYROID WORK and his statement was i thought you might have hosimotos hence why we didn't want you to have any iodine..
I always test my doctors and question everything they say and every drug they TRY to give me..

To Dave
 

Thanks, Dave for the info.

Yep, that's right, my Vit D levels were that low. I have also been dealing with gastro issues (malabsorption) which have caused me problems, including Vit D deficiency. Endo says a level 60 is what I am shooting for.

I will look into the liquid Vit D at Amazon, but will run it through my endo and gastro docs first.

You are right, many docs don't pay much attention to nutrition, vitamins, etc. Thankfully my endo and gastro docs are more "holistic" in their approach to my treatment.

Neuro is great, but very very focused on, naturally, neurological problems. He tends to want/need to quantify every variance with my MG symptoms, but as we recently found out with my problems after flu vaccine - sometimes there are no clear-cut explanations.

Sometimes I feel guilty when I go see him - I see the poor other patients he is treating, with MS and Parkinsons' Disease, etc. - and I feel like I have nothing to complain about!

That is, until MG gets whacked, and then I remember that
MG is nothing to fool around with !


My left arm is still much weaker than right arm. But has improved from my initial response to the flu shot. Thank goodness.:)

reaction to flu shot
 

Hi-I get a shot every year too. got mine last Tues. Feeling VERY tired - this started yesterday. I guess my immune system is responding to the shot. Have had this some previous years as well, though I think the reaction came about later.

Hi SoftTalker,

Just thought I'd kick in here to say I got *extremely* ill with MG symptoms after receiving travel vaccines two years ago. I do not as yet have an MG diagnosis, but I do have quite a few of the symptoms.

I am wondering about autoimmunity, "leaky gut syndrome," and poor detox pathways with regard to this issue of varying reactions to vaccines.

Have you tried the GAPS diet or another gut healing diet to heal your nutrient absorption challenges? It is challenging, for sure.. I am working on this at present myself, but have difficulty passing up on the short term gain of cookies...

Hope you feel better soon. T

A new diagnostic category for autoimmune illness caused by
adjuvants has been created:

http://neurotalk.psychcentral.com/sh...88&postcount=8

This does exist. The adjuvants are the additives to the vaccine to cause the patient irritation and inflammation so the immune system will react to the dead virus.

I am still not doing well.

Exacerbation continues even though my prednisone dosage has been increased. I am taking good care of myself, have added B12 to my daily vitamin/supplement mix (in addition to regular meds), keeping stress down as much as possible, meditating. Trying to do the right things.

I have become a fluffy couch potato (again) - much to my dismay. :(
I am (relatively) stable if I do nothing. Nadda..... zilch.....

But almost any muscle-using activity grounds me. Weak and very easily become extremely fatigued.

This is VERY depressing to me because 1 1/2 months ago I was in (what I believe) near remission, albeit still on meds.

Something - the flu shot or shock to my arm because the shot was extremely painful - or whatever - something is causing my MG to kick my behind.

Perhaps the flu shot has truly triggered another autoimmune illness, as mentioned in the thread above. ?????

My neuro is following me closely - and is readily available to me. Have seen him twice since my trip to ER, and he always says to call him if needed. And I have, and will again, Monday, Oct. 28, if I continue to feel this poorly.

This past week has been rough. Arm strength is better, but overall MG weakness and general stamina has plummeted. Have had on/off slurred speech, occasional shortness of breath. But not really a crisis, at least not like the two I have had in previous years.

This coming Monday morning, I plan to call my neuro (again). Perhaps I need IVIG to pull me out of exacerbation. I had IVIG several years ago when I had two crises within a relatively short time (hospitalized). Neuro is very conservative when it comes to IVIG, is as insurance approval.

But I am just NOT coming rebounding from this exacerbation, this time, and I have had a few moderate-severe exacerbations over the years.

Hate to complain. But this "fall" from a semi-remission is a hard one. Physically and emotionally.

I know I will get better. But it seems, it will be later than sooner.

I will update again.