NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   A few questions...... (https://www.neurotalk.org/myasthenia-gravis/98212-questions.html)

leaningin 08-19-2009 03:04 PM

Ankles
 
Quote:

Originally Posted by erinhermes (Post 553330)
Hello everyone! I hope this post finds you all strong and happy!:D

Recently I've had really bad problems with my head heating up - sweat will just pour down - I won't be hot anywhere else, but it feels like my head is on fire! I use a bag of ice to cool it down, but wonder what it could be.

I've also noticed that since taking my cellcept @ 2000 mgs, my appetite is totally GONE! I have to literally choke down food. I am still @ 60/40 pred, so wonder I'm no longer hungry.

Lastly, my ankles have been HUGE recently - the size of my calves.:eek:
:eek: I called my neuro to try and get some water pills but he wants me to go see my PCP = he doesn't want to "mask" anything and says there is no reason for me to retain 10-15 lbs of water weight in my ankles........

Does ANY of this sound familiar to any of you? I know it's silly, but I am afraid of congestive heart failure or something like that. I eat almost no salt, no soda, take my vitamins regularly and get on my EFX when I have the time/energy.......

Thanks!
Erin:hug:




OH girlfriend I can relate. I'm on Pred. and my ankles are disgusting. In fact I can't wear those knee hi nylons without them biting into my skin. HATE IT! HATE IT! HATE IT! I also have the fun moon face, bulge at the back of my neck, and big belly. Also get hot and sweaty easy. Did I mention that I HATE steroids. I feel for you girl.

erinhermes 08-19-2009 03:07 PM

Hey Martha!
 
What a GREAT idea! I'm going to try that 2morrow!

Big hugs!
ERin:hug:






















ank









Quote:

Originally Posted by leaningin (Post 554359)
I hope this won't gross you out but I discovered this solution to yeast infections from a friend of mine. Take a tampon, soak it in room temperature plan yogurt and insert it vaginally. All the good stuff in yogurt is absorbed in your system and it works like a charm. You may have to do it a couple of times. This has helped me when RX meds did not. Might be worth a try.

Martha


AnnieB3 08-19-2009 03:59 PM

No offense, guys, but before you put a food product up your vagina, check with your OB/GYN first! Topical solutions to what is clearly a systemic problem are only temporary solutions. And when food sits around in your vagina, it can cause even more problems when it "goes bad." You aren't supposed to eat yogurt after it's been on the counter for an hour or more because it can actually grow bad bacteria. It'll do the same in your vagina and even quicker because of the temperature in there. And how do you know that it all comes out? Drugs that you insert into the vagina are different - they are made not to go "bad" when exposed to higher temps.

Do you guys take probiotics? Do you take omega 3's? There are many other solutions to this situation. I would highly suggest a trip to your internist and/or OB/GYN!!!

I normally love good, alternative medicine but this is not really well thought out. Sorry, Martha, but I need to be honest here.

Annie

Pepe 08-20-2009 08:23 AM

Annie,

You make a valid point. I was thinking this is a great idea. I take probiotics religiously, a very expensive one (Floraq-2), omega 3, recommended from my gyno. Also, as I have mentioned, I was on Diflucan for one month, tried boric acid suppositories, baking soda, rephresh. All of these under the supervision of my gyno. I have elminated sugar from my diet. I still suffer from yeast constantly. I am VERY frustrated. Thanks for your input.
Dorothy

DesertFlower 08-20-2009 09:15 AM

Yeast Infection & Hydrogen Peroxide
 
Here's what my doctor recommended and it worked fast for my yeast infection cure (I rarely get yeast infections since curing them this way)

Hydrogen Peroxide mixed with water. I can't remember the exact ratio she(my doctor) recommended, but it was about 1/4 of the syringe filled with Hydrogen Peroxide and then the rest with water. Insert slowly with one of those syringes used to measure liquid medicine. Do this daily until symptoms go away. I am not a doctor so research this method before trying.

The reason Hydrogen Peroxide works is that your vagina naturally produces it to keep itself infection free.

mrsD 08-25-2009 03:02 AM

I'm back from vacation!
 
Hi folks! Wow this forum is getting really BUSY...lots of new members, and Welcome to you all.

I am reading and trying to catch up, so I thought I'd make a few comments on this thread.

1) Steroids also raise blood sugar...when this happens some patients (women especially) may see Candida appear.

2) the remedies for vaginal dysbiosis are commonly out there on alternative sites. Like the yogurt and hydrogen peroxide ones.
I agree with Annie...that yogurt is a food thing, and really the benefits can be duplicated with probiotics taken orally. There are studies showing probiotics help vaginal and urinary tract infections in addition to GI benefits.

The hydrogen peroxide suggestion leaves me with some reservations too. My dentist for example, does not recommend H202 use often in the mouth, because he says it can irritate mucus membranes and cause MORE problems.
Using it as a vaginal douche or wash diluted or in smaller volumes too frequently will kill off beneficial organisms that live in that area that keep it healthy.

I searched the net today looking for medical sites that recommend yogurt or H202 and couldn't find any quickly. All I found were alternative sites or forums with comments from other people (anecdotal).

There is a product called RepHresh, which is OTC now, and designed to keep the vaginal canal at the proper pH for normal bacteria, and to discourage odor or dysbiosis. It is expensive however.

One thing I think is overlooked is oxalate that is excreted in the urine. This becomes oxalic acid...and can be very irritating.
There is an organism in the bowel that normally keeps us from absorbing too much oxalate from food. Oxalobacter formigenes. It is killed off by some antibiotics commonly used. Then the oxalate is absorbed and goes thru the kidneys, stopping off to perhaps make kidney stones (calcium oxalate) or just eliminated.

Here is a list of foods that are high in oxalate:
http://www.branwen.com/rowan/oxalate.htm

Some high end, very expensive Probiotics claim that other organisms they include help with oxalate. But I have not had personal experience with them, to be able to verify that claim.
Here is further info:
http://74.125.95.132/search?q=cache:...&ct=clnk&gl=us

This one is the only one tested so far that worked on Oxalate:
http://www.vsl3.com/
It is expensive however.

Hope this helps.

redtail 08-28-2009 03:13 AM

Wow MrsD,

thanks for all that info.
I suffer quite badly from oxalate itchyness, it use to be HORRENDOUS!!!!!!!!!! I now stick to low oxalate foods and take calcium citrate which also helps to counter act the oxalates. I will look into the pro biotics tho.

erinhermes 08-30-2009 12:33 AM

HI Leaningin!
 
WEll, saw my PCP who gave me water pills for my really, really bad days..you would not BELIVE the difference it makes! I had CHEEKBONES! LOL!
So far I've only taken 1, but it was GREAT! I've also got a bone density test scheduled, and loads of other tests scheduled!:D

I bought some Spanx for my tummy, but they don't seem to help much, so I'm just switching up a size (now officially a 14 - was a 2-4), but darn(!), the deals on ebay are amazing! My hubby knows I have never, ever shopped like this b/4 and how insecure I am, so he has been great to me!

How are you doing? Are you OK?

Love,
Erin:D

Quote:

Originally Posted by leaningin (Post 554361)
OH girlfriend I can relate. I'm on Pred. and my ankles are disgusting. In fact I can't wear those knee hi nylons without them biting into my skin. HATE IT! HATE IT! HATE IT! I also have the fun moon face, bulge at the back of my neck, and big belly. Also get hot and sweaty easy. Did I mention that I HATE steroids. I feel for you girl.


ras1256 09-03-2009 08:20 AM

Hey baby girl - hot head, huh? LOL

Were you ever able to get someone to check you for the viruses? I had this exact same problem, which cleared up completely within 4 days of starting my high initial does of the anti-viral. It's back in much milder form now that I'm only taking 400 mg per day. My LP results should be back soon, and I'll for sure let you know about the viral aspect - I just feel there is something (infection) hidden on you that is causing your MG to be so serious now. I posted my discussion with the MDA neuro about how this viral thing could affect the MG.

As for swollen ankles - yes I had huge ankles and went to the doc about it. The had me buy some compression stockings ($38.00!) which I wore initially for a few days. Now only if I swell. I was so surprised to see how thin my ankles and feet really are!!LOL. It could be lymph passages not circulating as they should, rather than blood. Blood would cause discoloration and I was told to watch for that, but didn't have it - other than my little spider veins which they were'nt real concerned about.

Try the stockings, and please get someone to run the blood test for the antibodies to the whole range of viruses they can test for! You are sounding too much like me, and you're too young to have to deal with this, but if you have an active virus they can control with the viral meds, you can get better control of the MG and hopefully get off some of that other crap you're on!

Love to you, Erin. :hug:

Quote:

Originally Posted by erinhermes (Post 553330)
Hello everyone! I hope this post finds you all strong and happy!:D

Recently I've had really bad problems with my head heating up - sweat will just pour down - I won't be hot anywhere else, but it feels like my head is on fire! I use a bag of ice to cool it down, but wonder what it could be.

Lastly, my ankles have been HUGE recently - the size of my calves.:eek:
:eek: I called my neuro to try and get some water pills but he wants me to go see my PCP = he doesn't want to "mask" anything and says there is no reason for me to retain 10-15 lbs of water weight in my ankles........


Thanks!
Erin:hug:



maryec 09-03-2009 10:13 AM

Martha
lol...... Thats awsome !


All times are GMT -5. The time now is 03:37 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.