Discussions By Condition: I cannot get a diagnosis.

Balance & perception issues, fatigue, other symptoms (*very* long).

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • November 6, 2006
  • 05:48 PM

Last night my heartbeat was erratic during exercise, it made my chest hurt a little and made me nauseated.
For the past 3 days I'm off balance when I wake up (but not like vertigo or dizziness) and at the same time a slight tremor in right hand/arm. I feel the opposite of phantom-limb: that I 'lose'
extremeties if they're not moving or feeling a strong sensation (pressure, etc). This is relieved somewhat later in the day.
Lately my dreams are novellas.
I have had a constant, sometimes sharp headache for the past 6-8 weeks and a trip to the doc resulted in a negative strep test (FWIW - family members had strep).
I have a ruptured disc (L5-S1) diagnosed a couple of months ago.
I had appendicitis about 6 months ago.
I was diagnosed with asthma about a year ago and I go through phases of a few weeks when I'm short of breath most all the time.
I have a diagnosis of fibromyalgia and possible serum-negative RA for about 4 years. (2 rheumatologists) It manifests as constant joint pain, occasional joint issues like tennis elbow, flu-like achiness, mechanical and thermal allodynia, and neuropathic pain associated with particularly painful joints.
I've been chronically constipated for at least a couple of years, and thought it was a SE of the ultram (for the achiness of fibro/RA). I'm not so sure now.
I had encephalitis as a complication of chicken pox 20 years ago. I had a few episodes that resemble TIA: one in particular a few years later in which friends took me, conscious but unable to sit up or talk, to the ER. Semantically jumbled expressions gave way to babbling while my motor skills went south and I fell off the chair. A few hours later I was fine.

Ancient history:
Over the years I've had a few milder episodes in which my speech is altered and sometimes it's accompanied by numbness in extremeties and lack of coordination. The liklihood is greater if I'm drinking lots of coffee and haven't eaten in a while. My mother calls them "spells" and my grandmother has experienced similar phenomena all her life.
I had my tonsils removed almost 40 years ago. Before that I had scarlet fever and, as a result, most of my permanant teeth have scarring (enamel missing from certain areas).
My great-grandfather died of lupus. My grandfather is his son: his 3 sisters have polymyalgia, Sjogren's syndrome, and type 2 diabetes. My mother's sister has 'thyroid problems', as does her daughter. My sister has fibromyalgia, and her daughter (my neice) is positive for lupus antibody.

Meds & Prophylaxis:
I stopped all meds for 12 hours, beginning the first morning that I woke up with the balance issues.
I'm only taking ultram now (for the past few days), since the pain is just too consistently bad without it.
I've been doing PT 2x/week for the disc over the last month. The back pain is much better and the exercises are easy on the joints, for the most part.
I was prescribed cymbalta a few months ago for back pain and have been taking 60 mg daily. I don't tend to depression at all, but the cymbalta seems to make me less easily annoyed when the pain would otherwise make me a little crabby.
I had prescriptions for valium and oxycontin for the back pain (after the MRI revealed disc disease), but I don't take them.
I've been taking provigil for fatigue for over a year and for the last few months at twice the dose. It seems not to work anymore (I can *easily* nap after washing down a second provigil with a tab or other energy drink even if I've had 10+ hours of sleep the night before and have only been awake for a few hours). And when I'm on it, I tend to get UTIs at a much higher rate.
Over the last year I've taken: nasalcrom, allegra, and claritin for allergies. As of now, there's been no change in (very mild) allergy symptoms after discontinuing the meds.
Last year I tried several meds for asthma but none seem to provide substantial relief, including leukotriene inhibitors. Rarely bronchodilators provide some relief, but the steroidal inhalants just gave me thrush.
I've had a prescription for neurontin for a couple of years but take it rarely. It does provide some partial relief of the neuropathy.
I took bextra and vioxx for a couple of years until I started the ultram which was much more effective at reducing the pain.

On a pain scale of 1 to 10, I've never experienced a 10.
All my permanent teeth had cavities filled without anesthetic of *any* type. When the drill was hitting the nerve, 9.
I've had 2 children via natural childbirth with some tearing. Also a short-term 9.
Appendicitis rates a 7, but for only a few hours. At its worst, a ruptured disc was a 7 for a few days. Granted, I did have ultram to dull the sensations in both cases.

For whatever reason, I seem to have difficulty in communicating the severity of symptoms to healthcare providers, especially those other than doctors:
I wasn't able to schedule an appointment the day that I had appendicitis because the nurse didn't think it sounded adequately serious.
A PA prescribed an antidepressant for what turned out to be a ruptured disc.
I had to ask a skeptical PA to do a culture for a UTI - and then return for antibiotics when it was positive.

I teach full time at a college and have wonderfully flexible hours - I'm on my feet for a few hours a day and in the office for the remainder.
I've only missed about a week of work, total, in the last 3 years.
But I'm having real trouble concentrating now. That and the fatigue are the greatest impairments now that the pain is mostly under control.

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