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Over 20 years without help and getting worse with no one to assist

I am a university professor. Nevertheless, things are not going too well right now. My insurance offers limited services, so I am posting on this board with the hope that it will guide me in some direction. I've spent more than 20 years struggling with a terrible and unsustainable constellation of symptoms, and my situation is declining again. I will address my symptoms in a moment, but right now, I am housebound. Luckily, it's summer, but the clock is ticking again. In real life, doctors have believed I was exaggerating my problems, but I am not. They have belittled me as well, saying I had a "mystery disorder." One asked me to seek diagnosis in a mental hospital, and I did, and they sent me to a neurologist. I've seen two neurologists, and other than an MRI, have had no tests, having been stigmatized "a mental patient" (I have no psychiatric disorders at all).

Over twenty years ago, I began to experience severe pain in my lower limbs accompanied by 24/7 fasciculations as well as burning pain in my legs and tremor in my hands. I suffered myoclonic twitches every few seconds, to the point that I am still on sleeping pills over 20 years later due to the jerking feelings which worsened at rest. I also had piloerection (goosebumps) and sometimes, a fever. Often, my spine and face felt like they were burning too. And my left arm, but then my right arm, felt weak. The symptoms were severe. I had difficulty sleeping due to the muscular activity and wound up losing a dangerous amount of weight. I kept calm and was told it was just stress or something, and I went to group therapy. It did not help. I spent 20K seeking a diagnosis only to keep being told it was "all in my head," even though you can see some of my symptoms. They've progressed, so now you can see more. I was placed on anti-anxiety medication which made me not care and which seemed to sedate the jerkiness and tremor. I'm now off of that medication, and all of my symptoms are back and worse, there are new symptoms, like apathy or blurred vision or choking on food all the time. No one will see me to help me. I can't even get a basic antibiotic where I live, let alone a blood test, due to the subpar medical system our university has enrolled us in. Thus said, prior doctors were not helpful either. I look young, so I believe I was treated as naive or in a patronizing manner despite something terrible going on which effected the quality of my life and does once again.

This first round was preceded by two things, and I have no idea if they're related: 1.) I was hospitalized for, and treated for, a kidney infection a few months before; 2.) I had surgery for lymph node removals about a year before. Otherwise, nothing. I was not under unusual stress or anything. Still, my first neurologist tried: a PET scan (cost 5K and showed nothing interesting; turned out to be run by a scam doctor who is a lot of controversy now, no surprise); an EMG that he lost the files for; an EKG which showed "epileptiform activity,"; no blood work that I recall; an MRI which showed an arachnoid cyst on my left frontal lobe deemed genetic (it wasn't there two years before when I was in a car wreck, however, not that I doubt it's immaterial.

Now I am having difficulty with smiling and apathy as well as fatigue, and occasionally, feeling kind of odd, confused, hard to explain this. I am not depressed and was screened for it. I do notice I pee a lot, am thirsty a lot, and tend to be constipated. Sometimes I feel very confused (I am a 40-year old women in a high-level professional position who possesses a doctoral degree).

I have treated hypothyroidism, using T4, functional parathyroid disorder, for which I take high dose vitamin D and calcium, and magnesium deficiency, for which I take 500 mg. chelated per day. My labs are normal. Other labs that have been taken, unsure what they are, mainly vitamins and red and white blood cells, are normal. I have malabsorption for unknown reasons so I take a vitamin supplement.

My neurologist from long ago tried me on the following medications -- he thought maybe I had early onset parkinson's, but I'm not sure, and also, that xanax would help it makes no sense:

elavil, doxepin, remeron, trazadone, lithium, dexadrine, phenobarbital, celexa, zoloft, prozac, risperdone, triazolam, magnesium, calcium, vitamin D, xanax, triazolam, depakote, zolpidem, and gabapentin.

The xanax kind of helped, as mentioned. The others did not. I don't know why I was tried on mainly psychiatric meds. I was diagnosed with benign essential tremor and benign fasciculations, but I feel they are part of the same problem since they flare up at the same time.

Does this sound like anything at all??
2 Responses
Avatar universal
Sorry, I've been told I'm hard to follow because I offer too much information. I apologize and hope my problems are not lost in my post, but if so, I will clarify. Please just let me know.
Avatar universal
Maybe it's not neurological but endocrine. I set up an appointment with my endocrinologist for tomorrow out of desperation, and I will ask on the endocrine board.
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