Radha

for those of you with EDS, can one side be worse than the other side? it feels like my left side, arm, left side of head, left leg more bruising, more swollen blood vessels, i cant really explain it, right side symptoms too, but left side little worse,

Radha

yes my legs ache alot from so much heaviness and pooling, no med seems to help this pain, i have to keep my legs elevated at all times,

Radha

my eyes move fine, no drooping either, thats why i was hesitating to consider myesthenia gravis, thanks for all your replies,

Radha

for those of you who have or know about myesthenia gravis, can you have this without any eye drooping or any eye problems at all? i dont have eye problems but the muscle weakness and swallowing and chewing problems, just thinking of this as a possibility, thanks for any info

Radha

thanks for all your replies, i dont get numbness, just like muscles are getting stiffer and harder to move as i chew and its soft food too, not an apple or anything like that, and its very painful, my cheeks and jaw, and i do choke easily and have trouble swallowing at times, like i have swallow a few times and really push to get the food down, too bad there is no pill to help all this! thanks again to all of you

Radha

i had all my vaccinations when i was a child and i really dont think i could have mumps, where would i catch it? i cannot leave my home at all, but thanks for your suggestion

Radha

does anyone feel like their face muscles get heavy and stiff after some chewing, not total paralysis, but alittle like that? coudl this be because of POTS?

thanks for any input,

Radha

does it have any calories at all?

Radha

could you please tell me which brand you bought and how tight it should be, how long do you wear it? i dont know what size to buy, sorry for so many questions!

Radha

how long do you wear the binder? how long after you are done eating? and how did it make a difference? thanks for your input

Radha

could you please explain what an abdominal binder is and where i can get it? thanks

Radha

this is really hard to explain but i hope someone will understand, i get this terrible, very painful pulling in my whole midsection everyday at the same time for

about 2 hours and then it just stops on its own, it feels like my upper body is being pulled down towards my legs like i need to curl into a ball, after it stops

my whole insides ache so so bad. if anyone has any idea what is causing this and why it could be happening i would love to hear it! its totally different from

the twitching and jerking i get and i know its not a seizure. i have been getting this for a long time, but its getting worse and lasts even longer, thanks

Radha

wish i had some wise words of wisdom, but i really hope you get some relief, i was thinking of trying metformin, but after hearing about your experience, i decided against it since i dont eat enough and dont need any more lows in blood sugar, wish you the best

Radha

thanks so much for your help, i take cortef, 10mg, seriphos and schizandra complex herbs, i know the cortef dose is very low but i have lyme and steroids are bad for the bugs, thanks again for your replies,

Radha

i have not been officially diagnosed with addisons, but do take cortef and cannot do any of those tests because i would have to stop all my meds and

supplements and my doc knows i cannot manage even a day without all the stuff i take, is there any other reason to cause darkening of the skin other than

adrenal problems? i have had darkened skin for a while now but its getting worse, and i just assumed its cause of the adrenal insufficiency that showed up in

my saliva test i had a long time ago, thanks for any help

Radha

for those of you who have any kind of adrenal problems, has your skin gotten darker in certain places, like knuckles, elbows, brown spots all over body, i

know this is a symptom, but what has me worried is that its getting even more noticable, does that mean my adrenal gland is getting even weaker? any

input would be appreciated, thanks

Radha

what i wanted to know is do you have to have routine blood work, not just home monitoring? because i cannot handle having regular blood tests, they take at least one tube at a time and i feel too weak already, thanks

Radha

i would really appreciate alittle more help, do you need to be monitored with regular blood work that your doctor has to order when taking this medicine?

and is it ok to stop it suddenly if you dont think its helping or do you have to taper off slowly and how will you know its helping? will you just feel better or do

you have to check your blood sugar regularly with a monitor? thanks for all your help

radha

For those of you who have taken or are taking metformin for hypoglycemia - what dose are you taking and did it lower the sugar level or just keep it from jumping all over the place and keep it more stable so it wouldnt suddenly drop? I do not want to take it if it might lower my sugar even more, did you have any side effects like weight gain or feeling even more hyper? Any info would be appreciated, thanks

Radha

i always have trouble breathing, but i cannot breathe at all if i lean back while sitting on the sofa, or leaning back slightly in bed, or in a chair, i have to be constantly leaning forward to be able to breathe at all, does anyone else have the same problem and does anyone know why its so hard to breathe if i lean back even alittle? i am ok if i am lying totally flat, thanks for any input

Radha

i know i dont have allergies, because the symptoms are the same everyday no matter what the weather is, and i do know eating makes the congestion worse and it has nothing to do with food allergies because i dont have any allergies and dont eat any dairy, wheat or fat or sugar, its terrible, but nasonex helps some, not alot, but some,

Radha

all i have to do is put my legs down, just sitting, and my legs get so so heavy and veins bulge and feet slowly get purple, and then the lightheadedness gets even worse so i have to keep my legs elevated all the time.

radha

i also have terrible sinus congestion everyday and it also makes me keep coughing, the mucus is so thick and so hard to get out! putting any saline just makes it worse becuase it doesnt come back out! just clogs me up even more! nasonex helps some but its so hard to make it go up all the way since there is so much congestion blocking the nasal passages. this really affects my whole life and i wish the usual allergy meds would help, but as you know its not allergies! wish you all well and please keep me updated on any ideas, i could use all the help i can get!

Radha

i know exactly how you feel, in the beginning, when doctors had no ideas what was wrong with me, my parents and family also didnt believe i was really sick

and i have to say that after so many years and even now that everyone totally knows and believes how sick i am, still i can never forget how alone and

desperate i felt during those terrible times and still i feel a very strong need to keep proving how sick i am, and i can never forget the pain they caused me

even though i think i have forgiven them, i feel so bad for you that you have to suffer through this mental pain, i hope you have some friends or someone

else you can talk to and who will be open minded. we are all here for you

radha

what exactly is the sacro back support, is it a belt or a brace? wear did you get it and how much is it, my lower back is very bad, thanks for your help

Radha