I was diagnosed with DISH 3 months ago.

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maltluver

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Hi and welcome to the forum. Since this disease was unfamiliar to me, I did some research to find out just what it is. One of the articles I read was from the Mayo clinic and was really informative.

I can really empathize with you and understand your fears. I did read about the difficulty swallowing and it seems it is recommended that you see either an Orthopedic Spine Specialist or a neurosurgeon who specializes in spine problems so that they can assess the cervical bone spurs that are causing your difficulty. Having trouble swallowing would most surely take away MY appetite, so maybe removal will help you.

I wish you the very best and hope you will continue to post here for the support you need and maybe get some advise that will help.

Blessings.

Carol
 
i am 42 . i was diagnosed with DISH 3 months ago. it is quite advanced . my neck is fused , my lower back is being fused and portions of my upper back have started to fuse. ive been to several doctors in the past , and NOT ONE , ever told me something was wrong. i found out by going to the emergency room after i had problems swallowing , i have tried for the past 3 months to find people in my age group that have got the disease. and found nothing until right now. ive been looking for statistics and found none. ive been looking for a surgeon who has experience with cervicle removial of bone spurs . and most doctors dont even know what this disease is. my left hip hurts a bit all the time but the pain is tolerable .

i have read some of whats on this and i want to know what to expect as far as pain level. i am so hoping that i can talk to someone so i can know all i can know about what this is doing to other people as well as me. and how they cope. i am sorry that you have to face this . i can say that i only really know that it will eventually be a very very difficult jouney. i hope you feel better , i truely do.
 
thank you carol. some one else told me the same thing about looking for a neuro or an orthopedic spine spec. i will be looking into that . it is nice to know that there are people out there who can understand my problem. for now i have trouble swallowing only certain kinRAB of fooRAB, others go down easy. dry things mostly give me problems. monday if im not feeling better i will be going to the ER. i spent some time of the day trying to eat fruits and vegies milk oj, chicken sal. but only in small amounts , as days go by im feeling more fatiged so if it doesnt start changing soon then ill go to the hospital. take care carol. i hope you continue to do well.
 
Hello, It sounRAB as though you may need to see a Rheumatologist if you haven't already. This is no fun for all of us that are experiencing the grips of DISH. A neuro or orthospine surgeon is trained to remove bone spurs from vertebrae and they should be able to help remove the spurs that are causing your swallowing problems. Try and stay a positive as you can, I know how much it hurts, some days 5-6 pain level others 8-9 don't want to get up out of bed. I go to our local heated therapy pool 3-4 days a week to stretch and do specific exercises for my back, neck and body. This only gives me temporary relief but any relief is better than none. I hope this help some.

Kindest RegarRAB
 
will be over my moms for a while . probably be back monday or later on in the week. take care.
 
i am soooo very greatful for your response. its been about a week and a half that ive gotten into a rut i dont seem to get out of. i havent been eating well for about 3 days. i dont know if im even sleeping much. it seems that for some reason. ill eat only if someone cooks it for me but on my own i just dont have the arabition to eat anything. i dont know why that is . pritty freaken sad hu. i just feel so tired and drained all the time now. i have just started to see a specialist. i saw him once for the diagnosis and a 2nd time with my family so that he can explain more to them and answer questions i have. he has a very good reputation for someone whos got only 14 years. but i am his first case as young as i am. he wont give me any odRAB on my survival , he just simply says he doesnt know. he will say that the very most i have could be 20 years. but ive seen what its done in about 8 years and ive done some reading. i think a reasonable expectation would be between 10 and 15 yrs. but deep inside , i think i have about 7 if im lucky. i am going to go out to some cheap place to eat cause i know i just got to get something to eat and i have gooot to get some really deep sleep . PLEASE DONT BE OFFENDED BY THIS QUESTION. I DONT MEAN TO GET TO PERSONAL WITH YOU , BUT IM JUST CURIOUS. I HAVE READ LAST NIGHT ABOUT THE MAYO CLINIC WITH AN ARTICLE THEY WROTE ON A POSSABLE CAUSE THAT INVOLVES LONG TERM USE OF PROZAC. I HAVE BEEN ON PROZAC FOR SOOO LONG I DONT EVEN REMErabER WHEN I STARTED TAKING IT , AND IM WONDERING IF YOU HAVE READ ANYTHING . OR IF YOU HAVE TAKEN PROZAC FOR (AN EXTREME LENGTH OF TIME.) YOU DONT HAVE TO ANSWER THAT I WONT BE OFFENDED IF YOU REFUSE TO ANSWER ANY OF IT. (IM JUST ASKING) I AM GOING TO WRITE TO THE MAYO CLINIC AND SEE IF I CAN GET ANY DATA THAT CONFIRMS ANY PROOF OF THIS ASSUMPTION ON PROZAC. I DONT EXPECT A REPLY FROM THEM BUT I WILL TRY ANYWAYS. TAKE CARE OF YOURSELF. AND IM SO GREATFUL YOU WROTE BACK. JANEK. OR (YONEK) , ITS POLISH FOR JOHN BUT I HATE THAT NAME SO CALL ME ANYTHING YOU WANT.
 
Good Morning, Rough morning for me, but we all have choices, get up, one foot in front of the other, smile.

I am still learning the in's and outs, but I chose to keep my head up and try and be positive in some little way. I have two college daughters that I need to be here for and watch them and be with them so many things to be thankful for...Only the good lord above if you are christian, knows when we will pass on to the graceland, so like the songs says, live like you were dying..

The point Im trying to make here is "woo is me" never gets you any place at all, try not to let the grips of depression get you down..I know its hard but we all have the strength and knowledge to keep moving..

Kind of funny polish name...:D I worked for a Jan, Yon he pronounced it...Nice guy we had many good laughs..:wave:

Take care of yourself
 
I just wondered if you saw this related thread:
http://www.healtrabroadoarRAB.com/boarRAB/showthread.php?t=737688

There are some other people on the board that also share this diagnosis. You may find some useful information in the thread.

Hope you'll stick around and let us know how you're doing.
 
good afternoon.. i got maybe 4-5 hours i think . got up went to bank, paid internet bill. bought food. i am really going to try and pig out on fruit and vegies. then im going to a place i dont remeraber , now i do , staples to get a little supplies for bills and a thingy to keep them organized . ive always known when im depressed , always. but i dont really know if this is mental or physical so ive promised myself that i would make myself eat as much as i can on a schedualed basis . breakfest lunch dinner . if i can schedual it then maybe ill have a constant supply of energy that will make me feel like i can get things done. i took my news well. there were not many times i felt like breaking down at all. i thought well, ok. atleast i have time to do things ect. i kept comparing my life to a child who never got a chance at life. their tragedy is ssssoooooooooooooooooooooo much worse then mine could EVER BE. its kept me possative . well. thank you for your encouragement. HOPE YOU FEEL BETTER , I REALLY DO. im undecided if i even beleive in a god , but it doesnt stop me from praying for some one else. so i will give a special prayer up in the hopes that your day gets better. take care. BE GOOD TO YOURSELF.
 
im back, hello , hope everyone has been doing well. things are not so well but hanging in there. i looked up if DISH can cause or affect hydrocephalus. it said yes. i already have hydrocephalus but the docs told me it shouldnt get worse. my memory is getting worse. pritty much at the end of my rope , not sad , just mad. last night i locked myself out of my appartment. it was my birthday. i believed that i had the write keys, but i didnt . i looked all over the place, at the store, in the car, in the parking lot. i had my car key but not my house key. i remeraber having things that i dont . i remeraber vividly the right set of keys in my hand and after the next day i found them hanging up in my appartment. i forgot another appointment on the 13th. the list keeps going on and on. i have a hard time remerabering what day it is. 20 times through out the day. my family jokes on me saying my name is " i dont remeraber anything" im sound minded but just really want to know when it all stops. lost my credit card on the floor , someone turned it in thank god. ect ect i stayed at my moms half the week last week. it was good to see her. well, got to go . take care. try to keep well.
 
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