I was wondering if anyone else had been through a struggle to prove and identify any illness that had affected the immune system. Symptoms such as blurred vision, neurological dysfunction, sleep problems, malabsorption, etc. which sometimes don't show up in testing. In some cases testing is denied based on a doctor's opinion that it just isn't there--especially if the patient was already stamped as being depressed and anxious, which can accompany an authentic illness. I was just diagnosed with Somatization disorder and denied necessary testing that has left me with neurological problems which will undoubtedly now show up in testing, if I can convince a primary care physician to give me a referral. The somatization disorder description fits the criteria for many illnesses such as Gulf War Syndrome, pesticide exposure, or a number of other immune system disorders. Has anyone else ever been in this situation and fought it? I'm sure there are a few people out there that are hypochondriacs, but in this day and age when there are so many toxins in the environment and in our foods, the Somatization Disorder stamp seems like an easy write off to deny someone the use of their insurance and to explain an open-ended question which a doctor can't answer--what is it? I would be interested to know if anyone actually was able to legally fight a Somatization write off when they found proof of their illness and had been denied medical help.

Lily, Iv been told its all in my head. It is in a way as I was having brain inflammation that was making some of the same symptoms you stated.

I was diagnosed with Schitzophrenia, then schitzoaffective. I was also a hypocondriac running back and forth to doctors to figure out why I had been showing symtoms of stroke. To make a long story short. I knew that the problem was that thease doctors would think I was krazy and seeking attention. I couldnt convince them that this was not my normal behavior.

Since nobody listens to a person who is delutional I enlisted the help of my ex husband who knew me like 20 years. Since I was either a drunk Indian, krazy, mentally retarted (I was really messed up neurologically speaking) that I was treated like a child and sent home.

He would come with me right into the exam room. He would tell the doctor he has known me a long time, I was not drunk, on drugs. He said this was not normal for me to seek attention by going to a ER. He would state the symtoms he seen and also past episodes of medical complaints. That I was always a hard working person for years and in the past year went down hill with health problems. They hindered my hobbies like gardening so forth.

I also asked for a drug test to prove I was not drunk and they gave me one to rule out this. I also found a report of my grades from collage long while back showing my very high grade average, I slowly said "Im not retarted".

this got the ball rolling and a CAT scan, also a old doc there to look over my chart. They ruled out health stuff like my arteries being clogged and cutting off O2 to me so on. The I was admitted and several tests with a MRI that showed I had scars.

since Iv been treated for MS with Copaxone its very interesting as I have not had mania type behaviors or anything since.

Your correct when you say your behavior is or could be part of the symptoms of something.

If you have someone that knows you well, knows that your not a career hypocontriac, can sit in with you that may help a lot. It did me, seams family members can make a big difference in how your treated during a exam.

good luck and hope you get some answers Lily

now you know what people with fibromyalgia have had and still have to cope with.

Hi lily..OH boy do I ever know what you mean. From the young age of 20 to 27, I was in and out of Emergency rooms with different symptoms, but NOT quite enough to put the whole picture together, AT that time. I was once even thrown out of an ER being told that the place was for SICK people. By the time I found my Rheumy I was convinced that maybe I was crazy. My opening line to him was....."I guess I am a 27 yr. old Hypochondriac (sp?) THAT was 24 years ago. I still have the same wonderful rheumy who diagnosed my Lupus. Thank goodness...as I was VERY sick the day I landed in his office. Don't give up. Listen to your body. Our body has a wonderful way of talking to us to let us know when something is not just quite right.
I will say a prayer that someone gets on board WITH you and that you get the care that you need and deserve...
MissRain

Hi, Lily! I can really relate to your experiences. Not with my initial diagnosis of Myasthenia Gravis, which was given me in the mid 70's by an MG specialist. But since then I've been to 3 other neurologists. One agreed with the diagnosis and gave me steroids, a normal treatment for myasthenics, but which can go very wrong in the case of a few. Guess who was one of the few! Once out of the hospital, I went back to the clinic and was seen by a different neuro, who did a test for antibodies. 30% of myasthenics are negative for these. Guess which group I fell into! Of course, he said that since I was sero-negative, I could not possibly have MG. And would you believe, he had no record of my having been taken out of there by ambulance in a myasthenic crisis the last time I was there! Since then I've been to one other neurologist, who had a particular muscle test done, which also was negative. No matter that he failed to tell me to be off my medication for several days, as the medication could mask the condition. Or that the test was done with a malfunctioning machine, by a technician who was being trained. Nope, it's negative so I don't have MG.
Fortunately in my case, I have the support of a very caring GP, who has seen me at my worst, and knows it is MG and that MG is never the same in different patients. Through her I have access to my medication, though there are several others that I could be taking if a neuro prescribed them.
I hope you get the answers you need. Being in diagnostic limbo is not a pleasant place to be!
Hugs,

I have also been diagnosed with "it's-all-in-your-head Syndrome".

I don't know if they ever officially used the term somatization disorder with me, but early on I did have my primary care and several specialists tell me that my symptoms were all in my head (other terms used were "bored housewife" and "attention seeking").

I have had an anxiety disorder since childhood, so they saw that and immediately jumped to the conclusion that all of my physical symptoms were a result of the anxiety. Also, I was on Social Security Disability because of the anxiety, so they jumped on that too and used that against me.

What I did to battle this wasn't easy, but it was worth it. First, I fired my primary care doctor. Then I got copies of ALL of my medical records from the primary and the specialists. Then I went to see my psychaitrist. This was a psychairtist that I had for several years and I trusted him completely.

Anyway, I talked to the psychairtist, gave him copies of all of my records, and asked for his honest opinion. To make a lontg story short, my well-respected psychaitrist refuted everything that other doctors had said and agreed with me that I did NOT have any type of "all-in-my-head syndrome". The psychaitrist then helped me to find a new primary care doctor, wrote a great letter to that doctor to explain the situation, and from then on I had a great primary care doctor.

I have still had a few issues with specialists over the years, but thankfully my wonderful primary care doctor does not believe them when they try to jump on the "all-in-my-head syndrome" bandwagon... if a specialist tries to make that diagnosis, my primary care doctor sends them a nice letter stating that they are wrong and then sends me to a different specialist.

To make a very long story a lot shorter - it is because of my psychaitrist that I have a great primary care doctor - and I am getting proper medical care because I have such a great primary care doctor.

I hope that helps, and I wish you all the best of luck.

take care,
Liz

Lily, you have hit the nail on the head with the insurance denial thing. Here is a quote from the Smoke and Mirrors article in my daughter's website, which I STRONGLY advise you to look at as it may be extremely helpful to you.

"A political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored. To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to Government Ministers and to Members of Parliament, resulting in the withdrawal and erosion of both social and financial support [for M.E. patients]. (2001, [Online) "

After hubby was injured in 1992 and had had 2 - 3 surgeries on a badly injured knee joint, the doctor's said the xrays showed it had healed and that there could be no pain. The slightest touch on his knee sent him through the ceiling.

In 1997 they finally said okay, they'd do a knee replacement because he had bone on bone contact and could barely walk. My husband is NOT a cronic complainer, and I could tell he was in pain. No one can fake it for that long without a slip up.

I'd come home from work and find him sprawled on the floor, his knee wasn't supporting him, after several trips to the doctor who did the last surgery, he said, (the doctor said) that my hubby couldn't possibly be in pain because his work was perfect! This poor man couldn't even stand to wear long pants, a breeze moving the hair on his leg put him in tears.

We finally got him an appointment with a pain management doctor, who after a mere 5 minutes in his office told us what was wrong, and started treatment that week. After three shots in the spine and about a dozen down his leg, the pain went away. He could wear jeans again, he was able to walk without a cane for the first time in years...he was diagnosed with RSD...and it CAN be treated!

He has since gone back to using the cane for support, it's coming up on time for another knee replacement but the doctors aren't sure its the best move because he is diabetic and probably wouldn't heal real well. There are also other health and mobility concerns that don't make him a good candidate for surgery. But he hasn't had to go back to the pain management doctor, that part of his treatment is still working....thank goodness.