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Help with a Mystery Problem!?

Hi all,
I hope someone has some insights for me. This is probably going to read like a bad medical thriller, but here we go:

Female, 64 y/o. In generally good health; normal weight (until recently when I've lost a lot of weight), active, and until recently exercised regularly. My diet is normal and generally healthy. I don't smoke (never have) and drink socially. Had 2 children at 21 and 24 y/o. College education, employed as a producer.

I have had migraines and fainting spells since I was a kid (first fainted at about 6; first migraines at about 12). I had odd visual disturbances with the migraines, like tunnel vision rather than a typical aura, though I have had those, too. My migraines came and went, but in recent years, they've been elevated to "status migraine." I typically have between 10-20 a month. I cannot take topirimate as it makes me so dumb I can't talk. (I also have, and according to my mom, always have had, unusual reactions to medications of many types; most often I experience symptoms almost like an overdose on a normal, or even half-normal dose.) I do take Imitrex and it works most times. I have continued to faint/black out on a fairly regular basis, mostly due, I always thought, to low blood pressure.

I have some type of undiagnosed auto-immune issue and have had arthritic symptoms since my early 20s with pain, swelling, redness, and deformity of my joints (this started in my early 30s). But because I have normal blood work (other than a positive ANA and HLA-B27), I have not been diagnosed with rheumatoid arthritis or similar. The best I can get is "fibromyalgia." I have flares of pain and swelling, as well as periods of unexplained malaise, fatigue, fever, etc.

I experienced premature ovarian failure (38 y/o), and eventually had a hysterectomy for fibroids, and was told following that surgery that my ovaries were virtually "gone." I always kind of figured this was an auto-immune issue, as well.

About 20 years ago, I started to experience a very odd problem when sitting for a longish period, such as at a movie or concert: I would get a sensation of an electric charge building up in one or the other leg (either one could be effected), and eventually my leg would jerk violently (typically from the hip), then settle down, then the cycle would repeat. This could be as often as every ten seconds, or perhaps up to about 60 seconds apart. I thought it was related to a lower back problem (I had a ruptured L5-S1 disk, and subsequent surgery). It only seemed to happen when I was sitting still for a while.

Eventually, though, I was told that I did this in my sleep, with the same frequency. About 6 years or so ago, it began to keep me awake, and happen more nights than not when I went to bed. I would be wide awake, and get the electric buildup feeling, the kick (and now it was also happening in my core muscles so that my entire body would jerk), the resolution of the sensation, then it would repeat. It would go on for hours. Nothing I did stopped it, though if I walked around I wouldn't kick or jerk. It would go on for weeks, then stop for no particular reason for a while, then start again. It did not seem to be related to anything I did or did not do, other than being relaxed. It became progressively more violent, to the extent that I would sometimes make an involuntary noise, especially when my core muscles were the ones reacting, and I tore a tendon in my knee following one episode.

Then I started to have a sensation that someone was "moving the floor" under my feet - as if a rug were being slid under me, or the floor was moving slightly. I wasn't dizzy, though it was noticeable enough that I would feel as though I'd fall if I didn't catch on to something. It frequently happened when I was standing doing something, like washing dishes, or brushing my teeth. It seemed to coincide with the what I was now calling myoclonus. I also began to develop double vision in my right eye. If I want to watch a movie or talk to someone more than a couple feet away from me, I have to close that eye, or keep "readjusting" my eyes to make it stop for a few moments, but eventually the eye drifts out of focus again. I've tested it, and it's very much "double vision," with the second image just slightly above the other. I was also starting to feel unsteady on my feet, was tripping frequently and dropping things constantly. Sometimes I just felt as though I had no spatial sense - as if I had no sense of where my foot would go when I put it down.

I began to research all this, and the one place I was frequently led based on the various symptoms was MS.

I was referred to a neurologist, who wanted to do a sleep study for what she was calling "apnea." I said it most definitely was not apnea, and gave up following that trail. At the referral of a doctor friend, I saw a neurologist near NYC , who sent me for further testing. I had an MRI which was clear, and an EEG which showed some slightly abnormal brain waves in my right frontal lobe, though the doctor explained to me that it was probably nervousness. I was tried on pramipaxole and ropinerole. Both drugs made me unable to function (I couldn't form a sentence, or follow a book or tv show - I tried each drug for about a month to see if the side-effects would subside and they didn't). This doctor also wanted a contrast MRI, which insurance said was "not medically necessary." The drugs, according to my husband, did not stop the myoclonus from going on during sleep, even though they did knock me out.

Finally, I took a videotape of the myoclonus a couple of different nights, and showed it to my rheumatologist, who referred me to a hospital in Rochester, NY, and their neurology department. I went for a consult and EMG. I'm not sure if it was a mistake, but I was sent to the neuro-muscular clinic. I saw a woman who, after about 5-6 questions, headed down the "all in your head" path. My EMG was fine, though several times when a muscle was fired I had a very similar sensation to the electric buildup/discharge feeling; when I told the doctor performing the test, he said he had "hit the wrong spot," rather than the nerve he was aiming for.

The consulting doctor was not interested in any of my other neurological symptoms, such as migraines, or the movement sensation. By now I was also experiencing, aside from joint and muscle pain and weakness, a lot of numbness and pins-and-needles, particularly in my left leg and right arm. Sometimes my right hand is numb enough that I can't write - my handwriting is almost illegible at this point. In addition, somewhere in this jumble of symptoms, my sense of taste altered. Nothing tastes "right." As a consequence, I've lost about 20 lbs. in about 5 months. I also have severe tinnitus, mostly in my right ear, which started about 6-7 years ago and has become severe enough that it's a distraction.

This doctor kept telling me that none of this was of any interest to her, and that it had nothing to do with her specialty, though when we asked what a neuro-muscular specialist did, she refused to explain and said we had to hurry. It was frankly the weirdest doctor's appointment I've ever had! (I realize that's sort of a separate issue, but...)

So, that's the story! I have read on other people's posts that they have experienced a similar electrical "buildup" sensation, followed by a myoclonic jerk - which gave me some hope that someone has found a way to approach this medically to get some answers. Needless to say, the symptoms are severe enough and frequent enough that they are effecting my quality of life, and while I don't feel afraid that it's necessarily something life-threatening, I would like to at least know what's going on.

Thanks for any advice or similar experiences you can share that might lead me to the logical next step -

Nancy
3 Responses
Avatar universal
I couple of other things that I'm not sure are related - I have begun to experience nausea/vomiting many mornings, and have had for about 15 years or so, unexplained and slow-to-heal sores on my septum and lips (my lips will actually act as if they'd been burned - get red, very swollen, very painful -  and then peel for about a week). Same thing with the septum of my nose - just suddenly I'll have a big, painful sore there that refuses to heal. I'll usually have both of these symptoms for about a month, then they go away.

The nausea comes and goes.
10506901 tn?1431350757
Hmm.....just from what Ive been looking into recently, is it possible you could have lyme disease? it can cause all of these symptoms. On another note, and no I am not joking when I ask this, have you ever played with ouji boards or involved yourself in the occult?
1756321 tn?1547095325
"The first human leukocyte antigen (HLA) haplotype association with inflammatory disease was discovered in 1972, correlating HLA-B27 with ankylosing spondylitis. This remains one of the strongest known associations of disease with HLA-B27."

- Medscape - HLA-B27 Syndromes

***

"Table 2. Organ-Specific Extraskeletal Manifestations or Associations of Ankylosing Spondylitis

Eyes
  • Acute anterior uveitis

Gastrointestinal
  • Crohn disease

Heart
  • Aortitis
  • Aortic valve incompetence
  • Aberrant conduction
  • Cardiomegaly
  • Pericarditis

Kidneys
  • IgA nephropathy
  • Amyloidosis

Lungs
  • Apical lobe fibrosis
  • Restrictive thoracopathy

Nervous system
  • Radiculopathy
  • Cauda equina syndrome
  • Myelopathy
  • Vertebrobasilar insufficiency
  • Peripheral neuropathies
  • mimics multiple sclerosis"

- Neurology Medlink - Ankylosing spondylitis
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