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


advertisement
Reply
 
Thread Tools Display Modes
Old 01-13-2011, 05:02 PM #1
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default girl-talk again

OK, so you know those charts that show progesterone and estrogen in the female reproductive cycle? Here's one (scroll down--the third chart): http://www.merckmanuals.com/home/sec...41/ch241e.html .

Well, that progesterone line is a line of my myasthenia symptoms. I get gradually better as the line goes up, and suddenly worse when it suddenly goes down.

So I went to the gynecologist today and explained my problem (she said, "You're my most interesting patient today") and she agreed that supplementing progesterone at the end of the cycle, to avoid that monthly myasthenia crash, would be reasonable and not dangerous. And worth a try. I'll let you know how it goes. My suspicion is that it's not the hormones themselves that make me worse, but the sudden shift that throws me for a loop. I'm hoping this will ease the shift a bit.

I'm going to mention this to my neurologist, too, before I start. I'm really trying to be a responsible patient here. I also have an appointment with my endo to make sure my Graves' is under good control.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
redtail (01-14-2011)

advertisement
Old 01-13-2011, 05:15 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
Default

Abby, Are you going to try yam creme? Or pills? Yeah, I'll bet it's the drop too. I'm glad you have such a good doctor to help you.
AnnieB3 is offline   Reply With QuoteReply With Quote
Old 01-13-2011, 05:24 PM #3
DesertFlower's Avatar
DesertFlower DesertFlower is offline
Member
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
DesertFlower DesertFlower is offline
Member
DesertFlower's Avatar
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
Smile

Sounds like a great idea.

Something odd I've experienced recently, is that my weak times changed and are not following this hormone chart. In fact, I felt the best I've felt for a while on those days I expected to be the worst. I don't understand at all. I had three days where I had almost no MG symptoms and had to reduce the Mestinon amount I take.

I think my change has to do with food. I'm doing my best to eat good food recently since I do notice that I get increased symptoms if I eat anything besides whole foods. I am now only buying fruits, vegetables, whole grains, etc...and am cooking lots of soups and stir fries.

The last time I got tired from MG and started eating preprepared foods, I ended up feeling weak for 3 months and had trouble even doing basic care for myself such as showering and brushing my teeth. I have decided I'd rather skip a meal than eat fast food.

It takes so much work to eat good food! I wonder if the hormone cycle is effected by certain foods, I am guessing that it is.

Let us know how it goes.
__________________

.
DesertFlower is offline   Reply With QuoteReply With Quote
Old 01-13-2011, 05:30 PM #4
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
Default

Susan, I highly recommend this book for you. I saw this guy years ago. His book explains very simply why some foods interfere with the mitochondria of the cells and disrupt the Krebs Cycle. It makes me wonder if you have a problem with your mitochondria.

http://www.amazon.com/Food-Allergy-B.../dp/0963154478

Looks like he has a new one.

http://www.amazon.com/Food-Allergies.../dp/047138268X
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DesertFlower (01-15-2011)
Old 01-15-2011, 01:56 PM #5
DesertFlower's Avatar
DesertFlower DesertFlower is offline
Member
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
DesertFlower DesertFlower is offline
Member
DesertFlower's Avatar
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
Smile

Thanks AnnieB.

I know I have food allergies and have been working on eliminating many foods from my diet since I got MG. I have hope that if I find all the foods that are troubling me I may be able to minimize my MG symptoms. I've already eliminated the worst of my allergy symptoms such as runny nose, bloodshot eyes and scratchy throat.

Kind of funny that now I have MG but my allergies are mostly gone due to change of diet.

I'm going to read this book and look into the mitochondria thing. My mom also has allergies, and hers are much more severe than mine...she has been hospitalized in the past and almost died from allergic reactions. I wonder if there is something genetic.

The funny thing is that all the doctors I went to never had this kind of advice (eliminating foods from diet), but rather told me to avoid only those few foods that I was extremely allergic to and eat the rest, that my body would get used to them. I quit going to the doctor for allergies long ago since it seemed to be a waste of time.

Thank you.
__________________

.
DesertFlower is offline   Reply With QuoteReply With Quote
Old 01-15-2011, 03:52 PM #6
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default

Annie, the prescription I came home with is a gel, to be applied, um, femininely. It says "progesterone" and not "progestin," so I think it's the natural stuff, not the synthetic. I wanted something to use in the second half of the cycle because I don't want to mess with my fertility if I don't have to, and from what I've read, straight birth control pills have proven ineffective for MG patients whose symptoms worsen at the end of their cycles.

The doctor said that at my age (44), it's a little unpredictable what this will do to my cycle. But I also used to get horrible migraines (the delirious, vomit-and-pass-out kind) at the time of the progesterone drop. These have been cured by the diuretic pill I take, but I would think that the way my body reacts to the progesterone drop means something's out of whack with my hormones anyway.

I haven't quite decided whether to do this or not yet...it really does make me nervous messing with hormones. Someone wrote to me off-list to say that she tried the same thing and it was a disaster for her MG.

I have read that women tend to have a worsening of MG symptoms--sometimes a full-blown crisis--when the progesterone drops. I have also read just the opposite: that they feel better when their period starts. Again, that makes me think it's the shift that disturbs the body.

I nursed my youngest child until he was around two, and that shut down my cycle. When I started to wean him and my cycle resumed, I was a total wreck. I was having panic attacks and fits of violent shaking. They went away when my cycle regularized. In retrospect, I think that was, again, hormones shifting.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
Old 01-15-2011, 04:37 PM #7
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
Default

I know what you mean about playing with hormones. Especially those who are immunosuppressed and may be open to getting certain cancers. It might be worth a 2nd opinion on that.

This is a silly question but how do you feel after eating fish? Some people feel more awake. There are people who cannot handle too many prostaglandins though and it makes them feel emotionally "down." I don't know too much about prostaglandins, not as much as I would like to anyway. But there are so many things in our bodies that affect how we do or feel. It could be the progesterone that is off with you. But the body is like one big biochemical reaction factory and it's hard to know what affects what affects what.

It's certainly worth a try. And did you know that celery seed, or celery, is a natural diuretic? So is green tea. I like the mix of green tea with Matcha tea (Japanese tea). But it also has caffeine and may affect your MG.

Susan, What I like about what Dr. Walsh talks about is how additives interfere with the Krebs Cycle. They create kind of a "kink" in how it operates. I won't mess up Abby's post by going into it but that's what made me wonder if there's a mito issue with you.

Let us know how the drug works, Abby. I hope it works well!

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
Old 01-15-2011, 04:48 PM #8
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default

Quote:
Originally Posted by AnnieB3 View Post
This is a silly question but how do you feel after eating fish? Some people feel more awake. There are people who cannot handle too many prostaglandins though and it makes them feel emotionally "down."
That's interesting. I am normally an ovo-lacto vegetarian (I eat eggs and dairy, but not meat, poulty, or fish), but someone gave us some tuna, and I thought it might be worth a try. I didn't notice any difference...I was hoping the extra protein for lunch would make me less hungry in the late afternoon (I count calories to maintain a weight-loss).

I have been thinking maybe some regular salmon (all the omega-3 without the mercury, right?) would be a good addition to my diet. So thanks for the heads-up. I will pay attention to how it makes me feel.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
Old 01-17-2011, 01:06 PM #9
mvoyvodich mvoyvodich is offline
Junior Member
 
Join Date: Oct 2010
Posts: 42
10 yr Member
mvoyvodich mvoyvodich is offline
Junior Member
 
Join Date: Oct 2010
Posts: 42
10 yr Member
Default

I eat whole food only too and no gluten. Gluten tends to add to my fatigue an if I really eat too much it'll increase my weakness. I'm not sure if that's just me or something that can be generalized. I eat fresh fruit and veggies and meat. I also eat a lot of stews and soups because it is basically half way processed in terms of digestion and reduces the amount of energy i use to digest my food. sounds silly but at first i had a real problem with getting weak and exhausted after i ate throughout my entire body. eating this way helps me a lot. i eat small meals every 2 hrs. i also started making a fresh juice each morning (my mom and sister bought me the extreme bullet for christmas...it's great, light weight and everything). i've really been enjoying it.

a note about the hormone stuff. this month i stopped taking birth control and have actually experienced an increase in my strength. i'm not 100% but see a significant difference. i was on microgestin (so that one might not be to good for us with MG).

Quote:
Originally Posted by DesertFlower View Post
Sounds like a great idea.

Something odd I've experienced recently, is that my weak times changed and are not following this hormone chart. In fact, I felt the best I've felt for a while on those days I expected to be the worst. I don't understand at all. I had three days where I had almost no MG symptoms and had to reduce the Mestinon amount I take.

I think my change has to do with food. I'm doing my best to eat good food recently since I do notice that I get increased symptoms if I eat anything besides whole foods. I am now only buying fruits, vegetables, whole grains, etc...and am cooking lots of soups and stir fries.

The last time I got tired from MG and started eating preprepared foods, I ended up feeling weak for 3 months and had trouble even doing basic care for myself such as showering and brushing my teeth. I have decided I'd rather skip a meal than eat fast food.

It takes so much work to eat good food! I wonder if the hormone cycle is effected by certain foods, I am guessing that it is.

Let us know how it goes.
mvoyvodich is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DesertFlower (01-18-2011)
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
girl talk Stellatum Myasthenia Gravis 12 11-17-2010 10:16 AM
Girl Talk: A "shout out" question to the females out there... bobcatsrule Multiple Sclerosis 6 03-15-2008 12:12 AM


All times are GMT -5. The time now is 04:27 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.