Coping with undiagnosed disease - Rare Disorders Message Board

lourehha · 05-05-2002, 11:34 PM

For months I have been trying to cope with a chronic undiagnosed disease. Trying to mentally and emotionally deal with the unknown disease, not to mention all the suffering I have with the symptoms has taken a toll on me. I am seeing many Drs., searching for the diagnosis. I'm also seeing a therapist for the depression, and anxiety. That's not enough. I need to hear from others like me. Share with me how you are suffering physically, mentally and emotionally. Also, what helps you to cope! All responces will be greatly appreciated. Please Help!

------------------
Lourehha

[This message has been edited by moderator1 (edited 09-28-2002).]

lourehha · 05-07-2002, 07:37 PM

[/QUOTE]
Dear Denise,
God Bless you for your reply. It helps to know that someone else can relate to how I feel. Your so right, we can't fight unless we know what we are fighting. I've felt so defeated not knowing what to fight, for a lack of diagnosis. Drs can't seem to understand that feeling. Thanks to your reply, I at least know I'm not alone. I will pray for your son, and family. Again, God Bless Lourehha

HalleyJ · 05-12-2002, 10:08 AM

Lourehha, If it helps to know you are not alone, I've been dealing with not knowing why I have pain for 2 years. I've been to doctor after doctor and have had test after test and still no answers. As if that were not enough, my husband was admitted to the hospital last Thursday am for neurological problems and has had many tests. Everything so far has come back normal. Dr said next test is brain biopsey. This one scares me. He will be 59 in July. I agree with DDekruif. Research as much as you can. My internal medicine doctor hates patients doing that. I asked him if the fact that patients could use the internet to research had made his job easier, thinking if patients were better informed they would know more. He said no it made it harder. Perhaps because patients are asking harder questions. Try and take one day at a time, do only what you feel you can do and rest. I need to get to the hospital to see my husband now, but will look for your posts to see how you are doing. Halley

quiltingjean · 05-13-2002, 06:42 PM

You are absolutely right in being frustrated. It is OK. It is also OK to go and beat a fence post or hit a pillow or what ever you need to do to help alleviate that frustration. I too have to deal with an unknown DX. I have been dealing with the unknown for over 6 years. At first I went to doc after doctor, had test after test only to be told I am blossoming into something. They don't know what. I have 13 DX from atypical fibromyalgia to rhumatoid arthritis to lupus and yet they aren't sure if I really have any of them. But what I have found after all this time works best for me is acceptance. I have accepted the fact that this is my life. I know look for whatever positive I can find in my life no matter how little it is. I can no longer do the things I love, but I have found new things to love.

SO dont' give up, but don't let it overcome you either. DOnt' let the search rule your life. Get as informed as you can but don't forget to live your life on the way. Good luck on your endevors. Jena

lourehha · 05-14-2002, 06:02 PM

Dear Haley,
God Bless you for taking the time to respond to me, especially in the midst of all the trips you are making to visit with your husband in the hospital. My heart and prayers goes out to you and your husband.
You are right. I have found out the hard way, all of my docs. (which are many) resent internet research. I have tried so many different ways of approach, none to my avail. When I try to tell them how much suffering I have physically, they tell me I need a shrink. When I try to lightly touch on it, they ignore the issue. I was released from one hospital, not being able to stand on my own to feet. Kept overnight, and told there was nothing wrong, only to find out two weeks later from an M.R.I.report that I'd had another stroke. It was to late to treat me then. These days doctors are refusing to give concrete DXS., and people are getting therefore untreated for the causes. I don't understand. The stroke are just one of the many physical problems I'm having because of no DXS. The support from others in the same situations means so much to me and does help. You and your husband can relate, but to others who have never been faced with similar circumstances can't even begin to imagine what its like, or about. I value the advice you have given me. I will pray for the good Lord to guide both you and your husband through your trying times of pain and suffering, and to heal and give you both strength. You're not alone. Please do stay in touch. Again, God Bless Lourehha