Chronic mystery illness for 14 years

[Fugue]

I am seeking any information about possible causes, bloodwork that might be required and any other information that might prove helpful. My doctor doesn't know and actually told me to check around. All current bloodwork was supposedly normal and included basic blood panel, ANA and a few others I can't remember. Unfortunately, because of my history of psychiatric problems, I have been faced with discrimination from doctors who feel it is simply depression, anxiety, etc.

I am currently 29 years old.

Brief History starting around age 15:
- Reflux disorder
- Tremors, walking problems and other neurological problems
- Full body seizure type attacks (feels like shocks) which do not result in loss of consciousness or visibility to others.
- History of lesions and skin disorders
- Irritable bowel syndrome
- Loss of appetite, nausea, insomnia and psychiatric problems
- Chronic headaches, mental confusion and spaced out
- Fatique and intolerance to exercise and stimulation
- Frequent thirst and urination
- Endometriosis
- Carpal tunnel syndrome
- Chronic back, neck, & leg pain
- Feeling cold all the time
- Persistent sweaty feet
- Joint pain (without swelling)
- Swelling of fingers (occasional) and eyelids (regularly)
- Heart murmur, intense palpitations and other abnormalities
- Sensitivity to noise & sunlight (bothers my eyes)
- Stomach pains high up under my ribs mainly. Dull aches, bloating.
- the list could go on and I can't fit them all here. Basically every part of my body has been affected at different times.

In the past two years I have gotten worse. I've been documenting changes in my eyes which includes darkening of edges around cornea or iris of some sort (I believe), as well as rusty spots growing in my left eye (they have doubled in amount almost in direct relation to my illness). All of this within just a few years.

I have detailed pictures of my eyes at:
http://www.thenetter.com/eyes/DSCN6401.JPG
http://www.thenetter.com/eyes/DSCN6402.JPG
http://www.thenetter.com/eyes/DSCN6403.JPG
http://www.thenetter.com/eyes/DSCN6405.JPG
http://www.thenetter.com/eyes/DSCN6407.JPG

Thank you for your time and considering my question.
Any insight will be greatly appreciated.
Carole

[aklap]

Have you considered Celiac Disease or Gluten Sensitivity??  Many of the symptoms you describe are part of gluten intolerance.

Fibro & CFS symptoms have been helped greatly by a gluten free diet.

To find out more...http://www.celiacforums.com/forums/viewtopic.php?t=61

[Tess10]

Fugue,

I might suggest that you are tested for a possible thyroid dysfunction. It's important to have the doctor order a TSH (thyroid simulating hormone) blood test for his diagnosis, among possble others. Some of your symptoms might possibly indicate either hypothyroidism (underactive thyroid), or hyperthyroidism (overactive thyroid). An overactive or underactive thyroid can produce a very wide variety of symptoms. The symptoms often seem completely unrelated, often overlap,and are sometimes overlooked by patient and physician alike. Undiagnosed patients with thyroid problems have been estimated to be 50% or more. I would suggest you see an endocrinologist that specializes in thyroid disease.

Good luck.

Here is a link with some information you might find helpful:
http://www.healthology.com/

[Razzy Cat]

Hi Fugue,

I am wondering if perhaps you have Fibromyalgia or Chronic Fatigue Syndrome.  I am 28 and have had fibro for about 14 years--I spent 4 years undiagnosed, going from doctor to doctor, having countless medical tests run--none of which showed anything.  Many of the doctors that I saw didn't believe in Chronic Fatigue Syndrome--or dismissed it as a depression that middle aged women were prone to.  Being a teenager at the time, I was often told that I was "faking it" or "just depresed."  I finally found a wonderful rheumatologist who confirmed that my myriad of strange symptoms--including unrestful sleep, sleeping 14-18 hours per day at my worst, exhaustion, wide-spread and localized pain, headaches, IBS, etc. were part of the condition.  Unfortunately, there is no "cure" but there are ways to help manage the symptoms of it.

Some of your symptoms don't "fit" with the typical symptoms of fibro, but I have to admit that sometimes I have had some strange symptoms that don't necessarily make any sense other than that they must be part of having fibro.  But, the key things that make me wonder if you have fibro are 1--that you have gone so long without a diagnosis, 2--that you have such an ecclectic (and long) list of symptoms (especially the sleep problems and pain), and 3--that thus far no medical or blood test has shown anything.

There is a lot of information out there on the web about fibromyalgia and chronic fatigue syndrome--some of it better than others--but a simple search will definitely yield you some basic information about it.

Hope this helps!
Razzy Cat

[Fugue]

No. In fact, recently all bloodwork came back normal after seeing an internalist. However in the past few days I remembered something from childhood which would indicate Lyme Disease. At around the age of 9-12 I took a trip to Massachusetts during the summer to visit family for a few weeks. It was in a wooded area commonly visited by wildlife, and being a tomboy, I always played in the woods. Added to that, I was not a very clean child, rarely changed my clothes and would only agree to baths once a week. I certainly was not inspected for ticks on a regular basis.

At one point during the visit I became very sick and it was thought I had an extreme case of heat stroke. I don't remember any sort of rash, but I understand that it doesn't occur in up to 30% of all cases. I don't remember much after becoming sick, in fact I don't remember much of anything from that point up until about 14 years old. I always had the feeling that ever since that trip I was not the same, but over the years didn't think much of it. In fact, one of the features of my psychiatric problems was memory gaps, which was supposedly due to post-traumatic stress.

I would NEVER have been checked for Lyme disease over these years where I live (Nova Scotia) because it wasn't even around here at that time. No doctor here would ever have suspected it. I was able to identify 65 out of 75 of the reported symptoms of chrnoic lyme disease.

[Biskie2]

Have you had or been diagnosed with any autoimmune problems?

[Kevin Pho, MD]

There can be many causes to the symptoms you describe.  To first evaluate the upper GI system, an upper endoscopy and ultrasound would be a good start.  More specialized testing, including 24-hr pH study, as well as gastric emptying scan can all be considered for a more thorough evaluation of the upper GI tract.

Regarding the eye symptoms - you may want to consider Wilson's disease.  This is a disorder that leads to the accumulation of copper in the liver and other organs of the body.  The eyes can be affected (known as Keiser Fleisher rings).  If this is suspected, liver biochemical tests, a complete blood count, serum ceruloplasmin, 24-hour basal urinary copper, and slit-lamp examination for Kayser-Fleischer rings can all be discussed with your personal physician.

A referral to a GI specialist can be considered to evaluate the gastric complaints, while a referral to a rheumatologist can be considered to evaluate the joint symptoms.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[Fugue]

No vitamins. They never worked. I've tried many things over the years - no success. I've basically been managing my pain with pain relievers which are quickly becoming ineffective too. I have often had to switch pain meds at intervals (both prescription & otc) over the years to prevent building up a tolerance and to avoid addiction in those particular medications which had addictive properties. I have been very conscious and careful as to pain medication because of the complications that can arise. The only natural thing that has helped my bowel problems is Psyllium grain, which produces better stools, though it doesn't help much for cramps, bloating, etc.

[Biskie2]

What medications and/or vitamins are you currently taking?