Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 12-03-2014, 05:21 PM #1
Panorama's Avatar
Panorama Panorama is offline
Member
 
Join Date: Jan 2014
Location: Silicon Valley
Posts: 263
10 yr Member
Panorama Panorama is offline
Member
Panorama's Avatar
 
Join Date: Jan 2014
Location: Silicon Valley
Posts: 263
10 yr Member
Default IVIG Update

I just finished two days of IVIG. I feel stronger already.

I also had a lot of blood work while at the Infusion Center.
  • WBC 13.1 (reference 3.5 - 11.0)
  • Neut (%) 77.4 (40 - 70)
  • ASB Neutrophil 10.1 (1.5 - 7.0)
These numbers are related to the Prednisone. I am currently at the 30 mg daily dose, starting two weeks of 25 mg next week.

My glucose is down. On this test it was 93. I discovered that in the 10 hours after taking my Prednisone dose, my blood sugar rises up to 150 or higher, doping after that down to the 100 range. After eating it will spike to 130. I was taking my Prednisone at bedtime. This explains the 150-165 numbers I was getting when I awoke. I now take the Pednisone at the beginning of the day. I now awake with numbers in the low 100s, usually below 110.

My Vitamin D is low -- 28.0 - This is in the deficiency ranges (reference 21-29) -- Sufficiency is 100 ng/mL. I am taking 2000 IU of D3 each day. Not sure what to do. It is the lack of sun that is contributing to these numbers.

My Urea Nitrogen number is high - 38 (reference 7-24). I had a urine test, but the results were not yet available.

My B12 is good at 429 (reference 239 -931).

My A1C number is 5.7 (increased risk for diabetes 5.7-6.4%). Over 6.4 percents is consistent with diabetes.

My carbon dioxide is 30 (reference 22-32).

The other numbers were good. It is the Prednisone that is driving some of the problem numbers. I believe these should improve as the my taper continues.

I will be seeing my neurologist next Tuesday, and my PCP the following Tuesday.

-Mark-

Last edited by Panorama; 12-04-2014 at 06:36 AM.
Panorama is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
southblues (12-03-2014)

advertisement
Old 12-05-2014, 10:42 PM #2
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

Hi, Mark. I'm sure your updates will help others.

My internist recommended at least 5000 IUs per day for a D deficiency.

If you have any numbness or tingling in your face, hands, or feet, or have other signs of a deficiency such as fatigue, then your B12 number is NOT good. It's a very relative thing, and not enough of it can be reaching your tissues if you have symptoms!

I don't think it's only the Pred that caused that spike in numbers. It's only my opinion, but having a protein shake at night that has that much sugar in it was probably contributing greatly to the situation. It's better to have things such as a whole grain bread with peanut butter (as an example). Of course, peanut butter is fraught with problems for MGers.

I really hope you'll consult with a nutritionist. They can be very helpful!

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Panorama (12-05-2014)
Old 12-06-2014, 08:48 AM #3
Panorama's Avatar
Panorama Panorama is offline
Member
 
Join Date: Jan 2014
Location: Silicon Valley
Posts: 263
10 yr Member
Panorama Panorama is offline
Member
Panorama's Avatar
 
Join Date: Jan 2014
Location: Silicon Valley
Posts: 263
10 yr Member
Default

Quote:
Originally Posted by AnnieB3 View Post

My internist recommended at least 5000 IUs per day for a D deficiency.
I just bought a bottle 2000 IU D3 tablets. Is 6000 IUs a day acceptable? I know some people take 10,000 IUs


Quote:
Originally Posted by AnnieB3 View Post
If you have any numbness or tingling in your face, hands, or feet, or have other signs of a deficiency such as fatigue, then your B12 number is NOT good. It's a very relative thing, and not enough of it can be reaching your tissues if you have symptoms!
I got a bottle of B-12 last night. The recomended dose is one 3000 mg tablet a day.

Quote:
Originally Posted by AnnieB3 View Post
I don't think it's only the Pred that caused that spike in numbers. It's only my opinion, but having a protein shake at night that has that much sugar in it was probably contributing greatly to the situation. It's better to have things such as a whole grain bread with peanut butter (as an example). Of course, peanut butter is fraught with problems for MGers.
Remember I work nights. I do not eat anything durng my sleeping hours. I usually fast 8 to 10 hours.

The trend over the last week, since I started taking the 30 mg Pednisone dose during my waking and eating hours, is that my blood glucose rises by 10 to 15 ticks each hour or hour and a half to 160 or 165 after taking my dose. It usually takes about 7 or 8 hours after taking the dose to reach the high number, then it goes down over the next 2 or 3 hours to the low 120s. When I awake it is usually around 100.

My smoothies have no added sugar. I no longer use grape juice, in favor of water.

It includes a cube of ginger, two table spoon of freshly ground flax seeds, a cup of cooked oats, raw imported almonds, and one measure of the Ultimate Meal.

To this I add a handful each of raw vegetables, including white grapes, cabbage, carrots, kale, spinach, celery, and broccoli.

I add enough water to make 3 16-ounce portions, having one for breakfast with kefir, one late in the evening round 11:00 p.m., and the last when I get home from work around 4:00 a.m. I go to bed around 7:00, getting back up around 2:00 p.m.

Thanks,

-Mark-
Panorama is offline   Reply With QuoteReply With Quote
Old 12-06-2014, 09:41 AM #4
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Hi Mark.

Good that you got a handle on that glucose problem.

Your B12 is not good. The range published for you is outdated, and the new acceptable low is now 400pg/ml. In Japan it is 550!
So your B12 is not "good". You are barely squeaking by with it.
Keeping it at 1000 at least is a good idea for all people with neurological problems.

So pick up some methylcobalamin (this is the activated form) and take 1000mcg daily on an empty stomach. You could do 5mg a day for 3 months, and then drop back to 1mg (1000mcg) if you reach that goal of 1000. Methylcobalamin in inexpensive and readily available now at Walgreen's, Costco and maybe other stores. It is also available online at iherb, and many other discount places. It works out to pennies a day either way.

In your CBC results did you get MCV reported? This value will be high normal or high out of range if you are developing anemia.
It often points to low B12 before anemia develops.

The rule of thumb now for D3 is 1000 IU D3 for every 10 pts you need to raise. A goal of 100 is not reasonable for everyone. Some MS doctors try to get their patients to 100, but I think 50-70 is more reasonable for others.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (12-06-2014)
Old 12-06-2014, 10:15 AM #5
Panorama's Avatar
Panorama Panorama is offline
Member
 
Join Date: Jan 2014
Location: Silicon Valley
Posts: 263
10 yr Member
Panorama Panorama is offline
Member
Panorama's Avatar
 
Join Date: Jan 2014
Location: Silicon Valley
Posts: 263
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
So pick up some methylcobalamin
Will Do.

Quote:
Originally Posted by mrsD View Post
In your CBC results did you get MCV reported? This value will be high normal or high out of range if you are developing anemia.
Yes. MCV: 90.1 (80-100) -- high normal.

I wish I had keyed into the D-3 and B-12 problem earlier.

BTW I also started taking Wood Betony and Milk Oats, both consumed like infused tea. The Wood Betony can interact with some blood pressure medications, but not the ones I am taking.

My blood glucose go up 25 to 30 points in the one to two hours after eating.

-Mark-
Panorama is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Update on me and IVIg etc. Nervous1 Peripheral Neuropathy 0 06-17-2014 12:24 PM
Update on my IVIg therapy Nervous1 Peripheral Neuropathy 2 12-11-2013 11:02 PM
update one week after ivig MGdallas Myasthenia Gravis 8 01-08-2012 06:16 PM
my experience with IVIG, update Stellatum Myasthenia Gravis 9 03-19-2011 07:01 PM
Update on IVIG - a bad experience nancylee Myasthenia Gravis 3 07-23-2008 12:07 AM


All times are GMT -5. The time now is 03:56 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.