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:

YES! I spent a fortune going from doctor to doctor in terrible pain trying to get help.

A Houston Neurologist finally diagnosed me with Chronic Inflammatory Demyelinating Polyneuropathy and Mixed Connective Tissue Disease. I am currently being evaluated for Sjogren's, which I have already been told: I have it/I don't have it/I might have it/I don't know... Get the picture???

He related my health problems, which had previously been diagnosed as Fibromyalgia, Anxiety, Hypochondria, It's all in your mind, etc. to a 17 year history of breast implants, which were promptly removed and found to be leaking and ruptured... You know, the implants that are supposed to be safe?

I can well identify with the frustration experienced when doctors do this to people. I cannot even remember how many Rheumatologists I saw before I finally got one who didn't dismiss me rudely... "Now take your anti-depressant Cathie, you just need a good night's sleep... Meanwhile, I burned so badly all over, I couldn't even stand the sheets on the bed touching me...

Further, you know the pressure points they use to diagnose Fibromyalgia? I could not get one single doctor to listen when I said that I hurt ALL OVER, not just at the pressure points...

Cathie

I had a similar problem... it took me over 12 years to get diagnosed. But then it was in my head as it was two pituitary tumors wreaking havoc with my endocrine system. But during that time, I had been to psychs, GPs, gynes, immune, rhuems, neuro, derms... it seemed like every specialty to treat the individual symptoms but no one could put the entire picture together as my disease was cyclical and the endos felt hormones do not cycle (periods, anyone?). I was called a liar to my face countless times and my husband was asked about my drug and alcohol use! It ended up being Cushing's and a prolactinoma. Endocrine disease has many emotional components that are so overlooked by docs but felt by patients. And unfortunately pit tumors do not always show in MRIs and are very underdiagnosed. Now I have pathology... but it was a hard battle and my body lost.

Yeah ... when I was 16 and vomitting up nearly all I ate.... the psychitrist couldnt find anything so he sent me to a psycologist who gave me a test that would maybe turn up a pyromaniac or serial killer... IT came back normal but slightly depressed... AHHH my neuro psych and I were trilled ..lmao... It turned out to be FOOD ALLERGIES/ INTOLERENCES, which really is just another symtom of my Igg/ Iga issues ... I figured it out at 17 ... and folks wonder why I dont go to the dr...

You bet I've had trouble! I've been ill since 1997, but my first diagnosis, fibroyalgia, wasn't until 2000. And then even after being diagnosed with sero-negative Sjogren's in 2003, I am to this day encountering doctors who don't believe it exists and play the somatization disorder card!

I moved to South Dakota from Colorado in November and can't get a rheumatologist here to take me seriously. It appears the only way I'm going to get a specialist to treat me is to go to the Mayo Clinic and do all my testing over again. Not cool.

It's not our fault that our ailments don't always fit the description in the textbook. We shouldn't be accused of being mentally unstable every time a doc doesn't immediately figure out what's wrong with our immune system. Sure wish there were enough good docs to go around. :rolleyes:

fanfaire
:cool:

Fanfaire and Sharky and all?
 

As Nide44..aka Bob B. keeps saying? Not all docs graduated at the top of the class! Sometimes you really don't want a doc who has gotten gold stars and awards all their lives. You just want one with a remnant of curiousity and a dollop of compassion!
For me that curiousity factor is key...that the mind is not like a clogged corroded pipe in a drain! Tweak that and you have an advocate. Of course, far easier said than done!
As for it beiing all in the head? Duh? The medical 'coctails' we find ourselves on to just get by, let alone function create as many problems and they help. Sad but true fact.
Depressed? My neuro always asks me that...Feel any 'changes'? is the other. Well, with what I've got, who wouldn't be depressed to degrees? If not THEN that would be the time for danger? Changes? Been so long that if the pain and numbness were to 'go away' tomorrow...I would probably have a panic attack or something...Wouldn't know what to do about it - been so long since I was 'normal' over 4+ years I just don't know what/how Id take it.
Hugs and good things in any way for you all and SOON! - j

I don't mind educating a doc, as long as they actually want to learn. I went to a primary care doc once with a mouth full of sores I'd had for a month. He was mystified, but when I told him I thought it might be a manifestation of Sjogren's, he took me seriously and researched it and figured out how to treat it.

I've even been a poster child of sorts for autoimmune disease. My ENT used to introduce interns to me (with my permission, of course) so they could see first hand what happens to the mouth and sinuses in Sjogren's. Most interns only get to see this stuff in textbooks.

Unfortunately, I've met far more docs who were arrogant and refused to listen to me than ones who were truly interested in getting to the bottom of what ailed me. I've been yelled at and thrown out of offices for politely pointing to documentation from credible medical sources. So many doctors have been hostile to me that whenever I see a new one I tend to be defensive myself, which is not a good way to establish a doctor/patient relationship.

I don't mind answering a question about whether or not I am depressed because chronic illness can affect your mental status. What I do resent, though, is being accused by a doctor of lying when I state truthfully that I am not depressed. Or when a doctor is pointedly ignoring my physical symptoms and stating that they must have a psychological origin just because that doc hasn't seen a case like mine before.

I don't expect a doctor to be perfect. But I do expect them to give me a chance.

fanfaire
:cool:

toss my story in the ring here.
 

I just gotta tell this one.
I had severe fatigue,loss of balance, dizzyness, shortness of breath, cold hands, chest pains and few more symptoms that began to get worse every day.
On Sunday I couldn't even get out of bed, so husband took me to the ER.
Doctor was adamant I was having a full blown panic attack and perhaps inner ear virus.
She put me on IV of Valium and Meclazine...this made me feel horrible like I was going to die!...I pulled out the IV so couldn't put more Valium in me.
I complained of the chest pain, EKG performed showed nothing.
I begged they do basic blood work but this stubborn STUPID doctor refused to listen to me, claimed ALL I had was panic attack classic case and was discharging me from the ER, nothing more to do.
I argued all the way out the door.
2 weeks later this kept up....I fainted while driving a busy hiway.
Now at a different hospital system blood work ordered...ha! I was so severely anemic I was in danger of dying!...My hemaglobin was 5.1 hgb...and hematacrit 15%...thats pretty darned low! No wonder I had chest pains! I did't have enough oxygene to feed my heart!
I spent the next 2 plus years recieving blood transfusions while they searched the cause of my bleeding.
Finally was found an intestinal aneurism (AVM arteriveinous malformation)
So was NOT a panic attack!...I was bleeding to death!
Had the stupid doc at least performed the basics on me she would have seen the cause of my symptoms were from massive blood loss!
But because I looked so good...I'm olive skinned, so no matter how anemic I am I'm never pale. My treating doctor did send her a nice letter to inform her perhaps she go back to med school so could tell the difference between panic attack and bleeding to death!
There is a difference...I know from personal experience!
I felt so angry the day she practically pushed me out of the ER claiming I was just having a panic attack....how sad! I really pray Karma does go around!

I tried sharing some information I'd gotten off the internet with my pcp, and he VERY rudely started making typing gestures over his head, and saying how "nothing on the net can be taken seriously". I then tried to explain that these were results from proven experts, and he kept trying to dismiss it.

I know many things on the net are to be taken with a grain of salt, but i also know that much knowledge can be gained here.
I took his assumption that i couldn't sort through the chaff as an insult and rudely walked out and fired his ****...forever.

And yes, i have been told "it's all in your head". Fell at work one day, hitting the middle of my back. Woke up the next day with my legs numb. The company doctor checked my reflexes, and since they were good he said "it's all in your head. Then maybe `10yrs later i was diagnosed with ppms.

Hello Everyone!

I am new here, but wanted to share that yes, for years I was told I was nuttier than a jar of Skippy peanutbutter...
Until they discovered my Hashimoto's Encephalopathy! Duh-oh!

Good thing it only took 8 years!

I swear there' a special class in medical school on how to dismiss your patients symptoms and thereby make your patient feel sicker!

It took 9 years for me to get diagnosised with Graves Disease. I even went to a mental health therapist about half way though it all for my "panic attacks" which were actually thyroid storms. It wasn't until I was falling and turning blue that I was "told" something was wrong.
A couple of years ago I started getting extremely tired/grouchy/fuzzy-headed, I had my thyroid levels checked and they were okay. After what I went through years earlier I wasn't about to try to explain how bad I felt. I couldn't stand to see "that she's neurotic look" on a doctor's face again. Well, I have two brain aneursyms and those are symptoms. Okay, the chances of these vague symptoms ending up to be aneursyms are very low and you know the chance of me complaining leading to them being found are even lower. They were found during an MRI ordered for facial drooping. It's just sad when you get emotionally worn down trying to get diagnosised and treated to the point you just give up. So don't let them wear you down. .

All in your head is just another way of saying...I'm an incompetent doctor who doesn't know what other test to run.

There is no such thing as all in your head. Head issues are caused by malabsorption, environmental factors, physiological issues in the body which are correctable.

The day a doc says this to me, is the day I say bite me and see you later.

I have had CFS for 12 years. I got one year of no symptoms when I was on atkins diet. Then I was dx'd hyperthyroid, early graves. Thought it was a car wreck that put me back into it, but I was also adding back carbs. Have been gluten free with my son for 2 months(he has celiac), if in another month, it doesn't go away I will get off carbs all together.

GL

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) "

All in Your Head:
 

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.