The Feet Curl

The Legs Revolt

Today was one of those days when you start doing something, and later you say "I should have know what would happen!".  It started out with a few swipes to clean up a dirty doorknob, then the door looked dingy, then I fixed the fingerprints on the light switch and I noticed the wall needed to be washed, and now its 2 am I have the curtains down in the living room, the cushions stripped of their covers on the sectional couch and the covers in the dryer, and I have rehung and rearranged all the pictures on the walls, and still need to move all the furniture to vacuum underneath.

Why did I start?  I know what I do - one thing is clean and nice and everything next to it now looks dingy and in needed of sprucing up - then I can't stop!  Hours later and the room is completely topsy turvy.  I also cleaned the cabinets and walls in the pantry because I went to get some paper towels and there was a smudge on the pantry cabinet and....well, you know the story by now.

The Legs are truly pitching a fit.  My feet started cramping at about nine this evening.  Five hours later, they are still cramping.  I tried eating a banana for potassium, I tried drinking more fluids, I have my feet right now on a heating pad - nothing has helped.  I suspect the nerves in The Legs have had it - no more cooperation.  I have very little strength in my legs tonight as I made the mistake of climbing on a ladder to get the curtains down and to hang pictures up.  For some reason that just starts the pain wagon rolling.  I have had charley horses in my calves and my arches and the top of my feet now for hours.  Hoping at some point this will go away.  Hoping that point is soon!!!

With the pain patch on, I don't want to take any more pain killers.  The Jimmy Legs don't want to stay still and my feet feel like the Wicked Witch of the East's feet in the Wizard of Oz must have. They curled up and shriveled away after the ruby slippers popped up on Dorothy's feet.  Hmm, maybe some Ruby Slippers would help???  I did have some red tennis shoes, but I don't think they qualify.  Sigh.

Finally - Dr. House

Crisis Management vs. Healthcare Appointment

Life here at my house has been not only hectic but in a tizzy.  I have not been blogging, and I have been staying close to home mostly because I had to help manage someone else's serious health issues and my Mom needed me close by.   She does not have the coping skills to keep up when events turn sideways quickly. Tonight I have some time to blog because while the crisis is not totally past I know everyone involved is safe and well cared for at this time.

The crisis was an hangover from the prior week, so my week got even better when kidney stone #2 of 2011 decided to pass Tuesday night. I debated about calling an ambulance. The pain (even with the fentanyl patch) was so severe I could not drive, stand or doing anything but squeak icky noises. My Mom was having enough problem coping with the other issues, I just couldn't leave her at home while I went to the ER to get help with KS#2. I rationalized that the ambulance would take 20 minutes to get to my house, the ride would take another 45 minutes, and I wouldn't get any pain relief at the hospital for at least another hour - and by then the stone might have passed. I toughed it out and finally got some liquids down my gullet to help push KS#2 down the path after about five hours of extreme spasms. Not something I would recommend if you didn't have to. Big sigh.

Wednesday I wasn't eating much of anything because of KS#2, but I had a tiny piece of some cashew brittle.  I don't eat cashews very often and never cashew brittle but thought maybe the sugar would pick me up and the protein in the cashew would actually digest.  I started having an anaphylactic reaction - joints swelling, stomach hurting awfully, hives popping out, itching itching ITCHING.  I thought - if I use the Epipen I will have to go to the emergency room, so I took two benedryls and a phenergan instead.  This did drop the swelling and some of the itching and stomach pain but I had forgotten I am wearing a fentanyl patch for pain.  I got a little scared because it did become difficult to breathe.  With anaphylaxis it is hard to tell if the problem with breathing is asthma, anaphylactic reaction, or medication problem.  I used my rescue inhaler but it didn't help much.  I think this was a drug-drug interaction between the benedryl, phenergan and fentanyl.  Too much too quickly.  I guess next time I will use an epipen.  Bigger sigh.


I had my appointment Thursday with Dr. House in St. Louis concerning The Legs and the neuropathic pain and weakness.  I had planned on taking Wednesday to drive up to St. Louis (because I fall asleep so badly when I drive it takes me at least a couple more hours to drive this than normal) spend the night, go to my doctor appointment, toodle around St. Louis some, maybe eat some really good Italian food on The Hill, go to Union Station, shop at the Dillard's outlet store - my usual St. Louis jaunt - spend the night again and drive back home Friday.  With The Problems at home taking precedence I decided to drive up and back on Thursday.  Very Big sigh.

I left at one in the morning.  The normal four and a half hour drive took me almost seven hours.  I had to keep pulling over to take a nap.  Nothing kept me awake.  Lately driving at night has gotten me very disoriented.  I seem to lose directional sense and depth perception.  Just what all the other drivers really needed to have on the road with them.  If I had only had the money I would have gotten airplane tickets to St. Louis, and then taxi'd it to Barnes Jewish for the appointment.  Ah well, I was very cautious driving and as dawn approached my vision difficulties got better.  Sigh yet again.

Fecal incontinence makes traveling a difficult problem.  Normally I won't drink very many fluids for two or three days before traveling, and don't drink very much during travel.  However passing KS#2 became a priority so I was primed full of fluids.  I took extra clothing with me, and was very glad because mid way I had an accident.  Since my external sphincter is not as functional as it should be, I just don't have pucker power.  As I explained to my colorectal specialist once the poop chute is loaded the payload delivers regardless.  I changed clothes twice before my appointment.  I was so glad I had brought the extras!!!

My appointment with Dr. House was at 9:30 am, but I got there early and was seen much earlier.  I had been to the Center for Advanced Medicine for Washington University Medical School, and Barnes Jewish Hospital before.  I saw Dr. Bellyfixer about the digestive issues I had from the radiation therapy overexposure in 2004.  He was quite helpful, and I found Dr. House and his team just as thorough and helpful.  Wash U definitely Rocks!!!

A young neurologist took my history and did a physical exam.  He did notice my permanent hive on my nose - I told him it was my Rudolph the Red Nosed Reindeer spot.  I guess it helps that I had gotten some sun, because that makes it shine more perfectly beautiful.  I warned him I already had several rare diseases, and if I got one more rare disease I might not believe it. Ha!!  I was so tired I am not sure if I made very good sense.  Good lord I had to remember who was president and do math and spell things backwards!  This is a woman who just pooped her pants twice in the last 7 hours.  I don't know if I was competent to do anything that required brain power...  When he got out the large safety pin to poke me with, I almost pooped my pants again.  Ouch! 

I had brought copies of xrays/mri's/ct scans that Young Dr. Kildare had said Dr. House would need.  Nope - didn't need any of them because I don't have a physical issue with my spine or hips.  I brought copies of Dr. Kildare's notes, nope they didn't need any of them.  They were glad that I had brought the immunology labs and some DNA testing I had done (I thought of that on my very own - take THAT Dr. Kildare!!!).  Dr. House and the young neurologist consulted with each other out in the hallway, then Dr. House came in and introduced himself.  Very nice, not like the TV Dr. House at all.  No arrogance, no immediate attempt to blame me for my problems.

Dr. House repeated part of the physical neurological exam.  Thank heavens - no current event quiz, spelling bee or math problems.  I was halfway expecting him to make them more difficult - there is a train traveling east at 40 mph etc. etc. etc.  Whew!!!  We discussed why Dr. Kildare had sent me there, and his conclusion that I had small fiber neuropathy.  We also discussed my problems with my bowels, bladder, pelvic pain, and nerve pain and that I associate the onset with my vaginal brachytherapy treatments in 2004.  Dr. House said he was going to repeat the EMG and nerve conduction tests using their techniques before he decided I had small fiber neuropathy.  If the tests were negative, then I might need to have a nerve biopsy.  He said their techniques were generally more sensitive than the ones I had in Springfield by Dr. Welby.

I got my blood test orders and the nerve test orders and was sent directly to the EMG lab.  The lady doing most of the test took her time and did much more extensive testing and also warmed up my foot saying if it was cold it could distort the test.  A doctor came in after she was done and read the results of her tests.  It showed a very subtle difference between the speed of the nerves in my arms verses the speed of the nerves in my legs. He said that he would probably say I had large fiber neuropathy, but did the needle part of the test which was normal first.  He went to discuss his findings with Dr. House.

The lab got me admitted to their services and I gave about a gallon of blood for some tests for other causes of neuropathy.  Not sure what they were but Dr. House said it would take a couple of weeks to get the results back so they may have to ship some of it off.

I went back to Dr. House's office to see if I needed a nerve biopsy.  He said that they had all concluded that I had large fiber neuropathy (which Dr. Welby had not detected).  I asked the cause and he did not say that it was diabetes, but he did say he just couldn't prove it was the radiation.  I asked him about the weakness and the pain increasing with activity and he said that was normal with this type of neuropathy.  I asked about physical therapy, would it benefit me, and he said probably not.  I asked about medication and he said I was getting what he would have recommended, but that I might double the fentanyl for more adequate pain relief.  He said I should call back in a couple of weeks if I didn't hear from them about the blood tests.  He said I might have small fiber neuropathy also but the majority of The Leg issues are from the large fiber neuropathy.  Huge sigh.

I got out at about noon, which is fantastic with everything that I did, and started home.  I got home about 6 PM and ended up going to a hospital and leaving there at about midnight because of The Problem.  By the time I got home I was so exhausted I was falling asleep standing up.  I slept very late Friday, and a lot of the day today.  Right now I am so tired I am falling asleep writing this - you probably can tell!!!  Triple huge sigh.

I go back to see Dr. House in six months.  I see Dr. Kildare in a couple of months.  I know that I have large fiber neuropathy, which is more consistent with radiation induced plexopathy but can also be from a lot of different things as it is the most common kind of neuropathy.  I also know that I do not feel cold the same in both of my feet.  One does not feel cold the same as the other.  Hoping the warm foot can teach the rest of my body how to feel warm instead of cold!!  I know there is not a lot that can be done other than what I am already doing for the pain.  Maybe a reason for the problem will come up when the blood test results are in.

The Headache behaved pretty well for all the activity.  The Legs and the pelvic pain and KS#2, not so well.  My mind is the same jumble it was before The Problem hit, and all the travel, and all the walking.  Hoping getting more rest tomorrow will help.  If this post is a little goofy, that is because I am majorly goofy tonight.  Gonna try to get some sleep.  Biggest Sigh Ever!!!

Low Dose Naltrexone

Wonder Drug? I Wonder. I Wish.

Naltrexone is an opioid antagonist used for treating addiction to alcohol and opiates.  The doses used for this type of treatment are around 50 mg once daily.  Reason would tell you that something that counteracts opiate pain medication would also be something that does not help pain.

There are some doctors now prescribing this in a very low dose to treat a variety of disorders (off label - meaning it is not the reason this drug has FDA approval).  The dose recommended is between 1.5 mg and  4.5 mg per day.  The website that touts this drug states that this must be compounded at a compounding pharmacy (where they build the pill from other components in the strength desired) and must be prescribed by a physician.  It seems to be fairly inexpensive and at that very low dose hopefully side effects would be minimal.

I learned of it through a discussion group I belong to.  One of the ladies who has a very destructive autoimmune disorder is giving low dose naltrexone (LDN) a try.  I don't know her success yet with it as I am not sure even how long she has been taking it - maybe just a few months.  I looked it up and read about it and am intrigued, though skeptical.

There are anecdotal claims and a few scientific studies that LDN can stop the progression of certain cancers, help with multiple sclerosis mood disorders and pain, help with fibromyalgia pain, stops the inflammation in Crohn's disease, and works to stop the immune response of autoimmune disorders.  Instead of working by suppressing the immune system (as prednisone, dexamethasone, prednisolone and cyclosporine do) it seems to work by boosting the immune system.

How does this work to decrease pain?  According to the authors of the website low dose naltrexone taken before bedtime produces "a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production."  Endorphins are the body's natural opiates - pain killers manufactured by your body.  Enkephalin is a specific type of endorphin that is sensitive to certain types of stimuli that might damage your body.  Enkephalin is also thought to be part of the cascade that creates an autoimmune response.

Since I rarely am asleep in the middle of the night, I can see how my body might be missing some nature endorphins and enkephalins.  Maybe this is what my PCP means when he says lack of sleep creates a build up that increases pain?

In treating cancer some think that in addition to increasing endorphin and enkephalin LDN targets the opioid receptors on certain types of cancers and thus somehow inhibits reproduction.  My interest in this is because the type of cancer I had (endometrial cancer) is hard to treat with a recurrence. I am keeping LDN as a treatment possibility in case my cancer ever decides to return.  I believe in using conventional treatments, but this would be an option you could take with the conventional treatment. 

Do I believe all the hype?  Not really.  The studies done are just for small cohorts under controlled conditions.  Most of the evidence is from patient stories and physician use which of course are not a controlled scientific blind study. The studies seem to all agree there is no harm from taking LDN and that if LDN is taken concurrently with opioids it seems to boost the opioid effect instead of suppressing it.  The one study on fibromyalgia said a significant gain of 30% reduction in pain was found.  I guess that is another disease where people are not able to have restful sleep!  I do find it hard to believe that one drug treats all these disparate diseases with the same mechanism, but that's the logical me talking!

Will I ever try it?  Definitely if my cancer returns (knock on wood!) because I won't have anything to lose. If my neuropathic pain and The Legs get worse or The Headache or The Belly pain are not controlled I might give it a whirl. I've tried a bunch of other stuff that didn't work so why not this?   Just more money down the drain!  After all, I bought HeadOn and applied it directly to my forehead - directly to my forehead - directly to my forehead - in a desperate attempt to quell The Headache!

Below find a link to a blog entry skeptical of most of the claims at the low dose naltrexone website.  Some points made agree with my conclusion that there are not enough real scientific studies to sort it out yet.

LDN - Medical Revolution or Psuedoscience?

Articles from peer reviewed journals concerning low dose naltrexone - most of these are for very small studies or a single case.

LDN and Pancreatic Cancer - a case study
DN and IL2 in Metastic Cancer Treatment
LDN and Crohn's Disease
LDN and Multiple Sclerosis 2010 (fairly lukewarm review)
LDN and untreatable solid tumors -2002- a study
LDN and fibromyalgia 2009 study (favorable)

Don't Fence Them In

Amish Iron Curtain Started

My neighbor has begun the building of the Amish fence (at least that is what we are calling it). Not an Amish built fence, but a fence to keep our neighbor's Amish enterprises to a degree of ambition equal to the state of the private lane that leads to their property. Since they drive by here with lanterns on their buggies at all hours of the night, I am glad that my neighbor has left the brand new gate open tonight so there won't be any drastic buggy accidents.

Since my neighbor is a retired truck driver, he has cleverly designed the gate so it will require a trucker to turn his rig on a dime to get into the lane. I'm not sure most truckers can even make the turn without ending up in the drainage ditch on the other side of the farm road. I guess they shouldn't have kept running over his yard. The welder was here with his portable welding rig and the gate seems to be finished.

The gate is painted a low visibility blue which looks great in the daytime but is not too visible at night. I am thinking my neighbor is trying some stealth tactics against the 3 AM drivers across his yard. Again, I am glad he has left the gate open so we don't have a buggy disaster tonight.  I don't know what a buggy crash would sound like but I would think there would be a lot of horse neighing.

For the last several days Amish traffic has been down. None of the Amish drivers or passengers stopped and asked what was going on, although every other neighbor and passerby did. Maybe the Amish are gathering their collective legal fees and planning on filing in court. Not sure if they have a leg to stand on if access is not restricted. Since their horses and cows have escaped several times due to their inability to keep a decent fence on THEIR property I guess trapping their livestock in the lane before they get out into traffic is not too bad. I guess we will find out as the drama unfolds. With my luck I'll get dragged into this, although the fence is on the same property line it has been for 30 years on my side.  I'm sorta feeling fenced in myself.  Sigh.

Took my brother to Walmart for a prescription and The Legs gave out on me. Having a bit of pain tonight. I just can't walk very far any more. The coughing from the flu is pretty bad when I move also so a double whammy of pain and lack of air!  Durn those Walmart pharmacy bargains and the large emptiness of the Walmart Parking Lot. I probably should have used a handicapped spot to park but there had to be people in worse shape than I am. I am pretty sure I saw a few jazzing around in their sleek shiny electronic chairs. 

I was glad though that there was no pukiness today and The Headache is better also.  Glad that episode is over! Now if I can just stop coughing I will be in seventh heaven.

My brother-in-law who had a very bad stroke a couple of years ago has been told he needs to have an operation to open up the carotid artery on his non-stroke side. It has closed an additional 10% in the last three years.  This is a life threatening operation for my BIL since they had difficulty getting his carotid artery sewn back together on the other side a few years ago and may have the same or worse problem with this one.  I am not sure what my BIL and my sister will decide.  They are going to meet with the surgeon and find out what options they have other than surgery.  It may be there are no other options than just wait for the next stroke.  My BIL has a hereditary condition with premature hardening of the arteries which makes these kind of issues more difficult than for the average person.  I worry for them and am praying for guidance to help with this difficult decision.

Meet with my PCP tomorrow, will see if there are any steps (ha ha) for The Legs before seeing Dr. House in April.  Hope you all have a great week - it looks to be cold and maybe stormy here.

I'm So Dizzy

My Head is Spinning and I have Jimmy Legs

Dizzy Dizzy Dizzy this evening. Nausea and dizziness are keeping me up tonight. Not sure if it's The Belly acting up, or The Headache being tricky, or the medication for The Legs. I've taken anti nausea medication today and it's not working, so I may have to try a different one tomorrow.

I am guessing it is a go for my appointment next week with Cleveland Clinic. I left voice mail with the study coordinator to see if my psychiatric test had been scored and evaluated by the study committee yet. I received no voice mail today, so either there is no news or the coordinator didn't come into work.

I worked a partial day today, and it was very productive. My poor bosses - wages and benefits are two major expenses for their company, and last year insurance rates increased 28% and this year the rates increased 18%. I believe in my state, an insurance commission sets the maximum percentage they can charge on an increase. I don't think my bosses get that chance to say to our clients - we are going to raise your rates by almost 50% in two years because the state says we can. I hope they don't discontinue the insurance we have because for me that would be a major undertaking to change all my doctors. I have no control over this, I worry because I may have to make an employment decision over benefits. I used to work for the hospital system that I utilize now, and I suppose I could try to work for them again, but I love my current job - hope there is no reason for me to try to move jobs at this time. I truly enjoy my work and believe in the company and what we do, and I really like all the people I work with. Haven't always been able to say that in larger firms.

I've had the "jimmy legs" all day. Probably means I am having more pain than I am realizing. Sometimes it makes it impossible to keep the legs still. I've sat with my heating pads on this evening, but I still feel cold even tho the house temperature is 81 degrees farenheit - plenty warm!

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