Unidentified immune illness--were you told it's all in your head?
 

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! :D
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

Yep, by one neuro...
 

WHO NO LONGER IS 'MY' NEURO.
Second opinions are cheap and can ultimately get you answers....if they are there to be had. - j

Yes, I'm sorry to say...
 

It c an make life incredibly difficult, especially when you already feel like what's going on with your body is so far from the norm, and no one else is or has experienced the symptoms you do. I've been blessed to have a very supportive family, and for the last few years a PCP who "listens" when I tell her something is wrong. The sad thing is, most people with AI disorders are so used to doctors not taking them seriously we only go when we can give clearly definitive descriptions of what's happening to us, and many times, WHILE it's happening if possible. By then sometimes the problem has advanced to a very serious state...:(
daez

Pieces & Parts
 

Unfortunately because of all the medical specialities we are treated as pieces and parts. Until one day the pieces (lung sarcoidosis) reveiled the pieces and parts were connected to sarcadosis/fibromayalgia/Menniers/anxiety/depression/IB, IBS, UTI, arthritis/bulging discs/heart palpatations/Gerd/sleep problems.
A good Family medical dr is the key. When you go to all the pieces and parts drs. they just don't understand the whole person or have enough of a relationship with you to understand plus they don't know EVERYTHING!
Thank goodness for the internet that makes sites like this available to educate and reassure all of us that what we feel is real, and adjust our lives to accomodate our illnesses for a better quality of life.

God Bless, :hug:

Educate Drs.
 

We need to be part of the team with our doctors, teaching them about what we have learned from others and the internet so that they better understand our diseases.:grouphug: