Thursday, May 30, 2013

Experimenting

I'm not feeling well. At all.  This past week I've been indoors most of the time because of the weather. I wonder if that explains the recent emergence of new/old symptoms.

Monday I started getting the chills off and on but no fever. That night I had bad nightsweats. The chills have continued to today. While showering I was having chills!

I'm also having a lot of nausea which started suddenly yesterday and has persisted. Nausea, lightheadedness, feeling mildly off balance at times, and increase in POTS symptoms. I'm also have moderate muscle pain in most of my body.

Last night I had light, sound, smell sensitivity along with those lovely migraine like headaches.  I felt (and feel) like I have both the flu and a bad hangover.

I had an episode like this for one day after being at my sister's house for about 6 weeks.  It was tough and I worried I would be stuck like that. This episode isn't as bad (I couldn't look at a computer screen or the tv).

Today I have sheering pain in the muscles in the back of my legs as well as my lower back, and lower arms. It does not feel related to a disc issue.

I'm also having some shortness of breath at times.  Stuffy sinuses, dry gritty eyes, increase in fatigue.

For about 2 hours yesterday I had trouble staying upright. When the bad nausea started I headed out to the backyard thinking being outside would help. I had just been under the sink looking for a sponge. I believe the dishwasher has a mold problem (can smell it). The dishwasher is right next to the sink.

When I got outside the heat made me almost pass out. I had to sit until I felt confident I wouldn't pass out. As I started my journey upstairs to my bedroom I would take a few steps and have to sit down because of the lightheadedness and dizziness.

I emailed my doctor who suggested a biopsy for Small Nerve Fiber Disease. I looked it up and it looks like what my Dad has. Unfortunately I also have a majority of the symptoms. It has a genetic component.

I seemed to have developed heat intolerance also.

So I've been experimenting. I've taken note of my symptoms when I'm in my bedroom near the small amount of stuff left from the old water damaged/moldy apartment.

When I go outside I don't feel as bad. I come upstairs and start to develop symptoms.

How in the heck am I supposed to convince a doctor to do a biopsy when I can't even convince doctors around here that I have a real medical condition and need medical help NOT a referral to a psychiatrist.

Another link to small nerve fiber disease:

"Small fiber neuropathy has been associated with many medical conditions, including glucose dysmetabolism,3 connective tissue disease,4,5dysthyroidism,6 vitamin B12 deficiency, paraproteinemia, human immunodeficiency virus (HIV) infection,7 hepatitis C virus infection, celiac disease,8 restless legs syndrome,9 neurotoxic drug exposure, hereditary diseases, and paraneoplastic syndrome. While most of these conditions cause a length-dependent small fiber neuropathy, others (Sj√∂gren disease, celiac disease, and paraneoplastic syndrome) can cause a form of small fiber neuropathy that is not length-dependent.4,8,10"
Small nerve fiber neuropathies also may result in autonomic and enteric dysfunction. Patients often do not identify the relationship of these symptoms to their sensory complaints; however, when asked, they may report dry eyes, dry mouth, postural lightheadedness, presyncope, syncope, abnormal sweating, erectile dysfunction, nausea, vomiting, diarrhea, constipation, early satiety, difficulty with urinary frequency, nocturia, and/or voiding.

Interesting that neurotoxic drug exposure is listed as one of the causes. I wonder if neurotoxins produced by the mold can also cause this.

Toxin Induced Neuropathy:


Motor > Sensory Toxic Neuropathies:

1. dapsone 2. disulfiram 3. nitrofurantoin 4. organophosphates 5. lead 6. vincristine

Sensory > Motor Toxic Neuropathies:

1. cisplatin 2. pyridoxine 3. thalidomide 4. thallium 5. arsenic 6. polychlorinated biphenyls

Systemic Features Suggestive of Neurotoxic Disease

The neuropathies resulting from most neurotoxins are remarkably similar in both their clinical and electrophysiologic characteristics. Occasionally, there may be systemic complaints or signs which suggest the nature of the neurotoxic insult. Usually these symptoms/signs are apparent with either acute high-level, or chronic low-level intoxication. The following clinical characteristics may be the identifying feature that suggests a TxPN:

- acrylamide - dermal contact associated with contact dermatitis, excessive sweating of hands and feet.
- carbon disulfide - chronic low-level exposure associated with a variety of behavioral and psychiatric abnormalities along with peripheral neuropathy.
- ethyl oxide - cognitive impairment and neuropathy with prolonged low-level exposure.
- hexacarbons - acute, high-level exposure may mimic AIDP with prominent autonomic dysfunction.
- lead - Mee’s lines, blood abnormalities (basophilic stippling, anemia), GI abnormalities, and predominantly a motor neuropathy.
- mercury - tremor and ataxia with a predominantly sensory neuropathy.
- methyl bromide - corticospinal and cerebellar dysfunction along with an axonal neuropathy.
6- organophosphate intoxication - early cholinergic symptoms, may have intermediate syndrome preceding neuropathy, late emergence of corticospinal tract dysfunction as the peripheral neuropathy resolves.
- polychlorinated biphenyls - symmetric sensory neuropathy associated with brown acneiform skin eruption and brown pigmented nails.
- thallium - prominent GI distress with high-level exposure, alopecia, Mee’s lines, hyperkeratosis with more prolonged exposure, sensory greater than motor neuropathy.




Tuesday, May 21, 2013

Incompetent Doctors

I've been living here 3 months now and I can say for sure that it sucks. I knew it wasn't going to be ideal and I knew the living situation I was going into wasn't going to be ideal great but I didn't expect what I got.

I love the bedroom and the acre of land, the chickens, and the fact that it gets really warm.

My roommates are not warm though. They are a couple who clearly do not want a roommate. They want the money but that's about it.

I asked about water damage and mold and was told no mold nor water damage/leaks. In fact, they own the house and one of them rebuilt it so I thought I was safe.

I'm not. As I was going down the stairs last week I could smell mold. The laundry room reeks of mold. The dishwasher smells like mold as does the kitchen sink.

And there's that dripping sound in the wall when I use the hot water. As I'm living here I can see how much the owners have neglected things that can result in water leaks.

Ever since moving here I've been trying to find a doctor and a psychiatrist. I was able to get a doctor's appointment for today. I had waited 2 months for this appointment. I did all the usual preparation.

I anticipated some skepticism regarding "cfs" but I didn't expect the hostility I was met with once I told him my diagnosis.

He hassled me on every single friggin medication I was on except for the gabapentin. He refused to fill my medications saying there is nothing wrong with me.

He said the reason my heart beats fast (POTS) is because I'm too thin. Ha!  I told him I was diagnosed when I was 40-50 pounds heavier (I'm 5'8 and weigh 119).

He proceeded to tell me that what I needed was a psychiatrist. I said great! He said but none of the psychiatrists in our system take Medicare so "here's the number to community clinics" see ya.

I told him that in all my years of being sick that I had never been hassled about my medications and illness like I was today (well the optometrist was also bad and weird about cfs) and then I did the ugly cry in spite of trying not to.  I'm not on any narcotics. He was upset that I'm on clonopin, flexeril, antibiotics, and antivirals. He said it was inappropriate and dangerous.

I told him I'm having severe back pain with sciatica going down my left leg and that I'd had back surgery in 2006 and that epidurals help. He refused to refer me for an epidural, refused to prescribe NSAIDS (told me to take Advil which I can't do for long because I have GASTRITIS).

I told him about toxic mold. He didn't believe me.

When I said I'm bedbound without the medications he sneered and said it wasn't because of any REAL illness.

I've been so isolated since moving. I thought living with people would ease that but its actually made it worse. Being pointedly avoided wears on a person's spirit.

I can't get any help in this shitty town.

So I'm bailing. I found someone who will buy my car. He said he needs to wait one more month which would have been fine but I need to leave sooner than later. A second guy is interested so I'm going to contact him on Thursday.

It's time to move on and it might be time to do something radical-like get a cargo van and convert it or an old U-haul and convert that and live a mobile lifestyle.

All I know is I can't tolerate much more of this. I have to do something differently.

Oh, the local paper had a series of articles on the higher than average rate of depression and suicides in this area along with reports of toxins in the environment.