How do you get a proper diagnosis?

Question

I've been to doctors for years and have still yet to figure out if I really have something wrong with me. I'm starting to feel a bit crazy or a hypochondriac. Anyway is there a certain way to explain your symptoms to a doctor, so they will take you more serious?

For years I have TMJ, a herniated disk in my lower back and the disk in my knee is detracting as well. Not only this I have "points" on my body places if they are touch cause extreme discomfort - like a big bruise or have sharp random pains. Sternum, Collarbones, Ribs, Lower back near tail bone, hips, sides of upper Thighs, sides of upper arms, either sides of my neck. This is also combined with extreme fatigue. Lately I have been sweating at night while I sleep. Anyway just not sure what else to do or to tell the doctors to have them help me. Any suggestion would be greatly appreciated.

Answer 1

Many people who are eventually diagnosed with Fibromylagia (FMS) often spend years misdiagnosed with other diseases and conditions. (I have concentrated on 4 main ones, although there are also other conditions with similar symptoms.) Even worse, some patients who present doctors with a bewildering variety of complaints may be written off as having psychosomatic symptoms - basically being told that it's "all in your head"! So how do you avoid this problem? How do you find out what is really going on with you? The initial answers to these questions are:

Research each disease and cross-reference listed symptoms against your own.

Write a complete symptom history for your doctor or neurologist. Too often, doctors are only told about symptoms that are occurring right now, and only getting part of the picture.


There are 4 diseases that come to mind that exhibit generalized body weakness; fatigue; and among other things painful or achy muscles and joints. That is Systemic Lupus Erythematosus (SLE) ; Myasthenia Graves (MG) and Multiple Sclerosis( MS) and Fibromylagia(FMS)

I suspect that you have FMS due to the above unavoidable symptoms plus:

The defining symptoms of FMS are chronic, widespread pain and tenderness to light touch, and usually moderate to severe fatigue. Those affected may also experience heightened sensitivity of the skin (also called allodynia), tingling of the skin (often needle-like), achiness in the muscle tissues, prolonged muscle spasms, weakness in the limbs, and nerve pain.

Although it is common in people with fibromyalgia for pain to be widespread, it may also be localized in areas such as the shoulders, neck, back, hips, or other areas.- so called tender points. Many sufferers also experience varying degrees of temporomandibular joint disorder (TMJ).

What is FMS?
Fibromyalgia syndrome (FMS) is characterized by widespread pain and fatigue. Fibromyalgia means pain in the muscles, ligaments and tendons - the fibrous tissues in the body. There is also a substantial symptom overlap between fibromyalgia and chronic fatigue syndrome (CFS). Some experts even believe that fibromyalgia syndrome and chronic fatigue syndrome are one and the same. If you can remember what it felt like the last time you had the flu - exhaustion, every muscle feeling pulled and overworked, hypersensitive skin, etc. - then you have an idea of what fibromyalgia entails. As with MS however, FMS presents a wide range of symptoms which can wax and wane, and can differ from person to person.


Who Gets Fibromyalgia?

Approximately 20 out of every 1000 people get this condition. Over 85% of these are women. Viral or bacterial infections, automobile accidents, or development of another disorder, such as rheumatoid arthritis, lupus or hyperthyroidism can bring about the onset of fibromyalgia. There is a genetic component to this disease and a genetic predisposition, combined with a triggering event, may cause disease onset.



Symptoms of FMS include, but are not limited to:

Pain - muscular aching, burning throbbing, shooting, stabbing pain
Irritable Bladder Syndrome

Stiffness & pain - especially in morning
Dysmenorrhea (painful menstrual periods)

Overwhelming or unusual fatigue
Cognitive or memory problems

Sleep disorder
Cold sensitivity (Raynaud's phenomenon)

Depression
Numbness and/or tingling sensations

Irritable Bowel Syndrome
Impaired coordination

Chronic headaches
Dizziness

Temporomandibular Joint Dysfunction Syndrome (TMJD) - face & jaw pain
Multiple Chemical Sensitivity Syndrome - odors, noise, bright lights, medications, various foods, etc.

Muscle twitching
Dry eyes and mouth

Testing for Fibromyalgia

Because in the past fibromyalgia has not been considered a disease but rather a clinical invention to describe a chronic pain syndrome, there were no blood tests or x-rays which reliably diagnose fibromyalgia. A new test is being researched, and may soon provide an additional tool to diagnose fibromyalgia (see APA Assay test). Currently, in order to diagnose fibromyalgia a physician must take a careful history and perform an examination which focuses on specific local areas of tenderness. These locations are called tender points. There are 18 specified tender points, and the patient must have a finding of pain (not just tenderness) in at least 11 of the 18 points, together with a history of widespread pain in all 4 quadrants of the body for 3 months or more. The doctor will also look at symptom history to determine whether the symptoms reported match the symptoms for FMS

Summary ~

Whether you have multiple sclerosis, fibromyalgia, lupus, or some other immunological, or neurological disease or syndrome, your chance at getting a quick and accurate diagnosis is immensely greater if you inform yourself about the various diseases, and if you create or keep an accurate accounting of all your symptoms


A questionnaires on this websiteis available or you can call at 206-633-2606 for copies. Their questionnaires are specifically designed for people with MS, but they can also be used to help establish many symptoms of other neurological and immunological diseases. They provide a springboard for your research into your own symptoms - to help you and your doctor to the diagnosis that will tell you what you really have;

http://www.msakc.org/Articles/MSFibroLupus.htm


You should be seen by a rheumatologist and a neurologist to come to an appropriate diagnosis and appropriate medical intervention.


Fatigue and pain can occur either with MS or with chronic fatigue syndrome (CFS)/fibromyalgia. People with CFS/fibromyalgia may have a variety of neurologic symptoms. The difference is that in MS there is objective evidence of injury to the brain, spinal cord and/or optic nerves that can be detected by neurologic examination and by MRI, while with CFS this is not the case. Also cerebrospinal fluid (CSF) exam may be useful in telling the difference as the CSF will be normal in CFS/fibromyalgia while it is often abnormal in MS. A neurologist usually can tell the difference between CFS/fibromyalgia and MS based on taking a history, doing a neurologic examination, and performing MRI and CSF exams. A qualified neurologist will take all of these into considerations along with your medical hx.

Both fibromyalgia(FM) /chronic fatigue syndrome (CFS) and Myasthenia Gravis(MG) are not autoimmune diseases.
There is no clear link between FM/CFS, and MG. CFS is characterized by a set of symptoms that may have many causes (that is why it is called a syndrome). Although both are manifested by fatigue, MG causes muscle fatigue that can be identified objectively by specific muscle tests, such as an EMG. Mestinon has been used for CFS, but my understanding is that it ultimately has not been shown to be effective


Systemic Lupus Erythematosus (SLE) is a complicated autoimmune condition that may affect the nervous system in many different ways. MG and SLE can occur in the same patient. MG produces weakness while SLE produces any combination of joint pain and swelling, rash, kidney problems, eye and brain abnormalities, and others. There are blood tests to confirm the diagnosis of SLE.

I hope these answers all of your questions and allay your fears somewhat. This is compilation of several articles on these diseases.


I know it's very hard not knowing what's wrong with you .


But hang in there!

Answer 2

If I were you, I would see a Rheumatologist and maybe and endocrinologist.

Some of the pain you are describing sounds like Fibromyalgia - it took 5 years for me to be diagnosed. The points you say hurt on your body are those typical of fibromyalgia and are called tender points. There are 18 all together. It also causes inflammation in the body which is like an internal fire inside (the sweating you are experiencing). It also causes muscle pain. There is no test for it - just based on symptoms and the tender points.

Check out the website below:
http://www.fibromyalgia-symptoms.org/

Good luck and hope you feel better.

P.S. I found that by typing out all my symptoms to take to the doctor (and once I started typing, the symptoms just came out of my head faster than I could type) and let your doctor read them - I just handed my doctor the piece of paper and they sent me to the Rheumotologist.

Answer 3

Problems like yours are difficult to diagnose since it could a combination of things - none of which resemble any common problems. To make things worse, there are no tests for pain, so when pain is the main symptom, the docs have to guess. If I were in your shoes, i would schedule a visit to a chiropractor or a licensed massage therapist that works for or is recommended by a medical office or hospital. The types of pains you are describing sound like they could be caused by muscle/skeletal problems. Some chiropractors will provide free evaluations which might help you sort out some of the symptoms and better describe your problems.

Answer 4

I would suggest going to see another doctor and asking for a referral to a rheumatologist, they will take it more seriously and they understand these types of problems more than doctors do as this is the area in which they specialise. All the best.