lillybits

i was denied and hat to appeal. now i have to go to one of the ssdi doctors at the end of this month. I guess they dont believe my neurologist that wrote that i am incompasitated.... watch i will have a good day and get denied again... my luck i swear....

i will try eliminating gluten. i will watch my fiber intake more. I know i have quite a few food intollerances and allergies which i stay far far awayfrom! thank you!

what were we talking about??? ha ha ya my memory is horrible. i dont even remember what i ate...its even gotten so bad my 7 &9 yearold finish my sentances for me! ugh...they laugh at me a lot but i have gotten to where I have to laugh at myself too otherwise i get really frustraited

my husband says mabe i built up a tolerance with the myralax and thats why things are getting worse????? I didnt think that was possible seeing as though it just retains water in the stool?

i had the barium x ray at mayo but didnt show too much. i drink 4-6 caps of myralax to keep things liquid to move. if i dont then nothing happens other than belly bloat and constipation. Now i am up to 6 caps of myralax and 2 dulcolax tabs to get movement.I eat a high fiber diet and excersize the best i can and still nothing....Colonoscopy showed just mild inflamation and gerd. prep was awful lots of vomiting and needed a couple additional anemas to run claer. what do i do now? My primary said that its all part of the neuropathy in all this. does it ever go away? can it be fixed?

I am 5'7" and went from 120 to 95 in a couple months. i am gaining weight back with maltodextrine added to my almond milk and ultrameal 360 hypoallergenic!!! doesnt taste the greatest so i usually drink it when i go thru my stages of not being able to taste much. Normally i have overactive taste or something. but now I AM UP TO 105!!!!

i get those all the time it is all part and parcel of trigeminal neuralgia.. eating talking and drinking is excruciating and I cant take meds for it because of my severe sensitivities. surgery is my next option...good times i swear!

lots more han just pots also. ........suspected mast cell also.....

my nerves were ok but my muscle was poor

no real friends or social life here eighter. they dont understand good and bad days or if i had to go home early yo lay down...i have a couple of true friends now that can deal with me..

anyone else just get drenched when you arent really doing anything/

i looked it up... thats crazy. I worked in hospice when i got very sick. i worked there doing wound care, meds and adls.... I had potsy symptoms for a few years before but went all out of wack after 8 months of working there...makes sence tho.. little bit too much for comfort

I dont know what is going on but now for three days I have hardly been able to eat again. I get tired gust prepairing my food then when i sit down to eat my jaw tires out and have trouble swollowing and chewing. i dont even want to et anything because of that.. one or two bites and i am full. i drink the ultrameal 360 and add multodextrine to my drinks for additional carbs and nutrician but that is even getting to be hard to swallow.. any suggestions? any one else going thru this?

i do better if i eat fruits and veggies till about 3 or 4pm pastas, cereals and breads are better tollerated at dinner but it still bogs me down pretty badly.. i feel for you! have you had our pituitary checked? a friend of mine in az has about the same thing going on.. ncs, pituitart tumor and severe hypoglycemia. she has all the pots stmptoms but barely failed the ttt.. i barely failed that also because it has become an involentary reaction to pump my leg muscles when they start feeling fill and my hr goes up.. and they never told me to be off of my betablockers....but i pass out while sitting and in a semi reclined position some days

AMEN! i have gone thru 10 different docs and my primary and neuro i have now are actually conserned about my well being. my primary even told me that its not in my head there is def something going very wrong in my body. soooo refreshing to hear that after years of hearing that i needed to stop stressing... and needed to meditate

i filed on line after my neuro deemed me incompasitated. i still got denied the first time and now i am waiting for what they have to say about my appeal...good luck to you ! it all depends on your doctors notes.. so hopefully your docs write everything down. also it might help to have the docs ut your symptom diary on file if you have made one

drop in blood pressure when upright. it can happen in any upright or semi upright position. if the blood and o2 doesnt reach your brain it is lights out regaurdless plus it causes confusion brain fog, and slowes over all brain function

i hve gotten worse in the last year and in the last six months i have had intense trouble with walking and talking. i can do one or the other.. whick is very dissapointing because i used to be very social and loved to go out running with my dogs....hoping it gets better! Go figure it got worse after my testing ha ha

myralax is my best friend. no one knows whats going on with my gi tract either..ibs dx at 15 and now gerd...but nothing on the fact i cant go to the bathroom without consuming over half of the laxitive section at the drug store....

yes endocrine! my mom has graves and my aunt on my dads side has hypo they both opted for the radioactive iodine treatment and are doing much better. just have to take synthroid now. bloodwork done every 3 months to check levels.. dont know if that helps but i thought i would throw it out there for you!

oh wow! right now i have medicaid.. whole family does. my husband is on ssd, my son is on ssi and my daughter and i have regular state medicaide.life in general is scary enough with health insurance. i know i cant go without my meds or being able to see a doctor when needed.. thank you momdi! you gave me lots to think about!

six years of in and out of drs offices and frustraition.internet can rock sometimes! my hubby found it! it was the third week / third month at mayo that I was diagnosed

i know when we get there we will have to be on state medical insurance. so i am looking up who accepts that. Issie after you moved to az did you have to go back thru the testing and how long did it take to get your first apointment?I lived in az for 18 years. west phoenix area but then wanted to live with season changes and grass. we went to montana.. dont know how i did there cause i was preggers..then down to tx where the humidity with the heat kicked my butt abd now up here in wisconsin. i dont know if it is just the progression of the diseases or the weather/climate that is making me worse. But I have never been this bad.

The humidity in the summers here drain me. just trying to breathe out side is a chore in its self. I do know I need a neurologist i have tremmors and insane nerve pain and a lot of numbness and tingling. my neurologist i have now i think will be more than willing to write out referrals to who ever he thinks will be able to help.i will look into the drs that you guys reccomended! The winters dont like me too much out here either. Plus my husband is disabled dt an injury at work and the winters reak havok on his back and my daighter has atypical left sided cp and the winters make her freez up and cause her pain...hoping this will be a good move for the whole family! thank you all so very much!

kim

good luck and have a safe trip!