Hi, I had Susac Syndrome since Dec 2001 and I have a few questions to ask susac’s. But I can’t get any good answers from them b/c of all the crap from that site. I have a lot of problems walking I was walking fine and then I gone down hill went to a walker and then a cane then they were saying that they would get off of it but it did not work out that way.
I want to be connect with any one that can help me out.
xoxo
Blessing
Linda Faye Hamilton
Hello ,
My name is Patricia i live in Maine. I have had rsd for 10years in my left foot and leg spreading up my other leg due to surgery on my foot. This disease has totally ruined my life. I had to stop working, my income has dropped i am on ssd. The pain and burning is unbelievable sometimes cant deal with it. Cant do things i used to like get down aon floor and play with my grandchildren. Oh by the way i am 55yrs old and i have 5 grown children and 12 grandchildren. They are waht keeps me going.
hugs Patriciai had a5 years old chiled with fragile x
Hi,
I have Protein S Deficiency & many other health problems. Both genetic & not genetic.
I have 100% blockage of the Superior Vena Cava from a blood clot that has been there for 7 years.
Recently (May 29th) had surgery to remove a mass in my neck (benign!!) & it was tricky keeping my blood thin but not too thin for surgery. I am healing well.
I look forward to chatting with others.
Hugs, RustyLady
I had the surgery a couple of years ago and my shoulder is still hurtin. I think I was better off without the surgery. Would like to hear from other people about their experince with it.
Hi I have had RPF for 5 years and Im in pain all the time I would just like to connect with someone so I can talk
After three surgeries in six years to manage nerve damage and pain from ruptured lumbar discs (L3-4, L4-5, L5-S1), i would like to offer my experience, hope, and courage to others experiencing severe chronic pain with this condition. The side effects of both the condition and medications can be devastating.
My doctor discussed this the other day and I want to learn all I can concernig same, as I may have it.
I am interested in Multiple Myeloma becaused my mother-in-law had this type of cancer as well as friends I know.
I ma a sick gulf war veteran.
I am a disabled vietnam vet. I was expose to agent orange while serving in vietnam. I am hispanic, born in this country dont need a green card. Like the song Born in the USA. Serve 20 years in the Military, speak four languages, I am in a wheel chair, unable to use my legs, or walk at all. I have degen. disease, in lower lumbar & cervical spine. & one foot in the grave. hello
I suffer from mesenteric panniculitis and would like to talk to others who do also to compare treatments, problems, etc.
I am in so much pain,I live in a small town in Kansas.There are limited specialists.And untill I severly fractured my back in mutiple places did my doctor believe me when I’ve been saying I need a bone scan.I’ve lost 70% in one hip from the steriods I’ve taken.Plus I have CVID.
I am interesed in ADD because I have been diagnose at age 53. It was a shock to me. I knew something was wrong from2nd grade on up. I was having to hard of a time with studies. Now I see the effect on memorization. For example, I have been studying spanish for over 10 years. I can speak it to get bye, but I still have trouble focusing and remembering. I have to think hard to remember. It is very embarrisng to me. My latino friends keep asking me what is wrong with my spanish. I don’t tell them about the ADD. I need help and support about the impusiveness and some one to share with. Rachel
I too have DI. plus a number other problems. It would be very interesting to be in contact with others with the same problem('s).
Hello, my name is suzzanna and I have a problem with depression and I live alone and don’t have many friends that come and see me unless they want something from me. I am in need of people that can discuss this problem with because my so called friends don’t have the time and the effort to discuss my problems with me and when a bout of depression comes on me I can’t call the doctor because he usually isn’t in his office. I would just like to join a chat line that has people there that have the same problem that I have or simalar problems that I can chat with. I know for sure that just talking with someone will help tremendously because I have seen many professional people in my life and have learned that talking to people with the same problems or maybe not the same problem but just being depressed, that it helps just to talk to some one that will listen and in return I will listen to them. So if there is anyone out there that can help me please speak up and I will be there for you also.
Thank You, Suzzanna
I have chiari, EDS, retroxflexed odontoid. I am tired of being sick.
I am a mom and grandmother and so far my kids and grandchild have not had problems, but neither did I until I was in my 40’s. I am HLA-B27 positive and do not know which parent is positive. I also do not know if either of my children are positive.
I am in the education field and need the use of my eyes!!!
I first had an Iritis attack in 1999 while at work. I had a huge water pocket appear on my eye and pain like I couldn’t believe. In 2000, I seemed to have the attacks more than not having them. I was almost constantly using the pred forte drops and had to take steroid pills a couple of times (two packs straight through before relief) They were threatening injections in the eye.
A couple of years later, I saw information from some discussion groups and learned about people who seemed to have milk and milk products seem to trigger the attacks. I started avoiding milk and now have an occasional attack, but it usually always happens when I decided that something such as ice cream is worth the risk. I also eat cherries, celery and other anti inflammatory foods to try to avoid the attacks (especially when I get that taletell ache in the eyebrow bone). I have been attack free for 1 year and 1 month now, though I have had several times that I either had the eyebrow thing or the eye start turning red or getting the ‘blister’ on it. I usually hit the cherries and treat milk like poison and get it cleared up without the meds. Med free for over a year is great for me!!! It is well worth the sacrifice of the milk and milk products. I swear by it and though I get my weak moments and eat ice cream, I use soy for all my other milk needs (even yogurt) and often get the frozen soy bars instead of ice cream.
I contracted this after a surgery for my back and still have people thinking it is all in my head and family members who don’t understand the condition. I find myself with no one to talk to about it and all th dr. wants to do is throw narcotics to me and send me out the door. Will they ever make this plain to poeple so they can understand it is not in our heads ? If they had to live with our pain for just one minute I’m sure it would become very clear.
I have been diagnoised with ocd.