I have been back to my nuero whom has read the reports from where I was attmitted to Emory Medical Center and apparently I'm making all my symtoms up. I dont know why on earth anyone would want to be in as much pain as I'm in but I'm being told its all in my head cause all my test have neg results. Anyone else have this problem if so what do I do now?
I replied to your other post this morning. This one makes me mad, because I heard it for years. Keep searching and don't tell them about the others. Write the basis of what's wrong and ask if they have any ideals . If they don't move on. Only you know your own body. Pray for the right doctor. I will too. Ask for referrals for those that specialize.
In Christ
you go to a specialist in pain medicine
Hi,
I agree with chronicx4. I have lived with migraines since I was 3 years old. I am now 51. The migraines I have now are everyday for the past 8 years. It is unbearable. No one really knows what it is like to go through this. I have very few people I discuss my pain to. Just a few close friends and family.
If you can journal everything you feel every day and keep looking for a new pain doctor. Praying does help if you can. Sometimes that is so difficult. Continue to be an advocate for yourself. Try to take someone with you when you go to a doctor and have them take notes for you. Our pain overwhelms us and the doctor(s) will just dismiss us.
Don't let anyone let you believe you have made this up. That is not true!!!
keep writing to the websites for support because there is hope. I know it...I am waiting as well.
Best,
Josee :)
Hi Pita,
I remember when you posted on the Isaac's site. If you read through that site you will see that many of us have struggled with this one and I am one of those people. I just got that reaction again, after being "diagnosed" for a while. I know that when that happens it sinks me into a really negative state, because I just don't believe that I "want" to be sick on any level. I have been seeing a psychologist since all this first started happening and she is actually someone who believes that there is something neurological going on. I don't think that medicine knows about all the weird diseases out there and when they don't have the answers they "blame " the patient by calling us nuts. They used to say the moms of schizophrenics caused the kids to go crazy. You have my deepest sympathy and understanding and you are in a really tricky state. I do agree that if you decide to try another doc DON"T tell them about your other doc's evaluation, because they will want to see it and then they will be influenced by it. Docs have this thing against "doctor shoppers" and think that it is proof that you are neurotic. Good luck, and if you'd like to talk to me more send me a friend invitation.
Betsy
I know it is not in your head. That is what they use to tell Michael. They could not find anything specifically wrong, but Amyloidosis results do not come up on any tests, only in biopsies of the bone marrow, or the infected organ, or in a skin tissue biopsy. A physician has to first, know about the disease, which many do not know and they have never seen it. There are many diseases that will not show up with basic testing, because you have to be looking for a very specific disease or at least have an IDEA of what you are looking for. Sometimes I really do not understand how these physicians get their degrees. If they cannot figure it out, send your patient to a team who CAN! I get very angry about this, the love of my life could have lived longer if only the doctors would have stepped up in the beginning and referred him to someone else or at least admit they did not know what was wrong because it was out of their realm of thinking and knowledge. Please do not give up and go to a facility that can figure it out as soon as possible. I pray for you everyday, think of you and your wife everyday. Your friend, Michelle in KS.
I had to reply to this. I had brain surgery resulting in severe visual impairment, and many learning disabilities. I had a driver's license for years, and did not realize I should have said I had a vision problem. I look normal. My license was revoked in 2004 by an eye doctor. I only went to get new glasses. I lived alone and worked 35 miles away for a state government agency. I had worked a long time without telling anyone about my disabilities, except a few friends. I was starting to fail in my work as I got older, forgetting things, losing things, etc. This was legal work, too. I had also slowly become very emotonal and that showed. I was told no license is not a reason to get disability. So I spilled my guts and told on myself, and was told by the state, oh well, you still have to come to work. I did for as long as I could until I used up all personal time when I could not get to work. I went on short term disability before they started docking my pay. I applied for Social Sec Disability, and was awarded in 4 months. The state, on the other hand, is now stopping my benefits at the 2 year mark, this November. No more disability, no more insurance for vision, life, etc. I appealed over a year ago, and have not had an answer. The state says I am mentally ill only, and there is a two year limit for mental illness. That is another subject, but totally discriminatory no matter what. The state sent me to a neuropsycho for a ten hour day of psycho tests a few months ago. He was a jerk, an idiot, and said in his report that I am a malingerer, and faking. Among other things he based his opinion on: I answered the same question he asked me three times throughout the day in three different ways. Duh! That's me.
I am finally happy in FL and now am fighting again.
Peace
Irene
Pita
Over half of them in the medical filed do not research anything and it is easier to just say a person has a mental problem, than to deal with the unknown issue. Pain is real But until they read NORD's Mayoclinic, NIH and others sites... it will be in our minds. Now what you should think about doing is get a new doctor. Write down your issues do your own research so when you go to the next Doctor have infor ready. I know they went to school to help us all of them went for all the wrong reasons. I suffer with COmplex Regional Pain Syndrome or RSD.. PAIN
Write back please and remember September is Pain Awareness Month across the U.S.
Jannie
Detroit, Michigan
Hi Pita,
I have been diagnosed with Isaac's Syndrome for several years. I had a similiar reaction to the one Betsy1 had experienced.
When I moved with my job and changed states four years ago, I contacted another neurologist. She was supposed to be one of the best around here. She had been recommended by my diagnosing neurologist. She was very interested in my case for three visits and ran every available test (even some that I had already taken). On the fourth visit, she was very short and dismissed me. She stated that her diagnosis was that I had something genetic that had likely been with me all of my life. Good Bye!
I think there exists a competition between neuros. Sometimes it requires them to entirely dismiss anothers diagnosis for their own. The problem is that the patient gets caught in the middle and is the one to suffer.
I ask you to return to the Isaac's site. Review back notes from some of the others. Their experiences with doctors should often mirror yours. Contact Mollypolly. She has a survey on many of us. She lists her e-mail address. Ask her for a copy. It will probably contain a lot of your symptoms. Know that you are not alone.
Change docs and find one that will understand. They're out there. I agree with Betsy1 that you should not relate previous doctors reactions. Let them start from as close to the beginning as you can.
If any of us can help, just let us know. It ain't a big boat, but we're all in it together.
On Oct1, 2008, at 7:58 AM
Dear' Pita
Hi my name is Shelly I'm here like the others to tell you not to give up and it has taken my mom and i a long time to find the right Neurolgist but we finally did he's great, he doesn't think that I'm crazzy and takes everything to heart to if you will let me know were your located I maybe able to help you....
And if you'd like i'd also like to be your friend........
Sincerly yours,
Shelly...................
Add to the discussion