Timeline since 2011 and the onset of nerve damage...

The past week I complied a timeline and information about the past 4-1/2 years living with nerve damage.

I want a separate blog entry with that information.

The timeline is presented in bullet-format.

Initially the timeline was brief, but has expanded from when I first posted it. It's still "brief" compared to everything that's happened.

Seems all my posts are working drafts. Much like life.


***
The nerve damage began in 2011 and has been an ongoing nightmare.

Since the onset, I have tried acupuncture, juice and broth fasts, diets, supplements, herbs, medications, coffee enemas (to help liver function), massage therapy, bicycling, water exercise, physical therapy, occupational therapy, psychological counseling, meditation, visualization, and possibly a few other things. Some approaches have helped; some haven't. When I try a new approach, I typically give it at least 90 days before deciding whether or not to continue.

I am not the only person to develop nerve damage while taking oral terbinafine. I have since learned that many drugs can cause nerve damage.

My symptoms started in feet and legs; I thought I was just becoming clumsy.
Shortly thereafter, I began to notice it in my hands and arms; my smart phone became heavy.
Once I realized that something was going on, I immediately quit taking a drug I'd been on for about six weeks: terbinafine (generic oral Lamisil).
But it was too late.
Within a week, all my limbs turned to rubber.

The initial symptoms were clumsiness, inflammation in all my limbs and extremities, low level persistent pain, shooting pains, numbness in toes and fingers, tenderness in palms and soles, and a stocking-and-glove pattern with a pins-and-needles feeling.
As time went on, other symptoms developed including lumps in my wrists and hands and ankles that would move around when pressed, and the bizarre sensations (especially in my forearms) of heavy wet sand moving about like mercury and of something trying to bend my bones internally.
Symptoms have slowly spread up my limbs and to my neck (10/2015) and partially up my back (11/2015) and to my jaws (01/2016).
Some of the initial symptoms (such as pins-and-needles, numbness, shooting pains, and numbness) have abated and are no longer ongoing, but occasionally they reappear.
Some of my symptoms mimic ALS: muscle atrophy, weakness, appetite suppression. weight loss (30 pounds in a year), heaviness of limbs, and fatigue.

The nerve damage dictates my life.
Every decision is based around the disability and what will help me each day to continue to function.
I've had to learn to move my entire body, from head to toes, differently so as to prevent injury.
I've had to even adjust how I chew food, and swallow.
I have to choose where best to expend the limited energy that comes with the disability.

Like everyone else I live my life moment to moment.
Unlike others, I live my life in 12-week cycles, the goal being to keep my limbs functioning until my next round of spinal injections.
It is my new normal.

Many of my previous later-life goals are now wishes.
I am not accepting defeat.
I am accepting reality, knowing that reality can turn on a dime.

As of this writing, my reality appears to be turning, in a good direction.
I hope so.

***

• In early spring of 2011, I took a medication, oral terbinafine (brand name, Lamisil), to treat a long-standing toenail fungus which had not responded to previous treatments. Six weeks later, my limbs turned to rubber. I stopped taking the terbinafine.

• In May, 2011, I received my first diagnosis: idopathic edema. I was put on medication and was custom-fitted with compression garments that stretched from fingers to armpits and toes to groin, on both sides. I received weeks of occupational and physical therapy. All to no avail.

• In July, 2011, I received my 2nd diagnosis: idiopathic serum-sickness-like response to oral terbinafine. The treatment? Low dose prednisone until symptoms disappear.  The longest cases seen by the two different doctors I then consulted were 12 months and 18 months. Prednisone kept me from becoming bedridden, but symptoms slowly worsened.

• In January, 2013, I began to consult neurologists. In February, I received carpal tunnel surgery on my right wrist. It helped the numbness in my fingers, but nothing else. 

• In April, 2013, the doctor who was prescribing my low dose prednisone wanted me to consult yet two more specialists (another neurologist and another rheumatologist) which would be at least a six-week wait. I was fine with that. But, instead of taking low dose prednisone to continue to manage my symptoms for those six weeks, she told me to take more Xanax. She refused to refill my 5 mg prednisone prescription; she was concerned about side effects. So was I, but everything else I was trying wasn't working to keep me functioning. The prednisone was keeping me from becoming bedridden; Xanax would be no help. I was livid. I argued with her, but she would not change her mind.

• So, after researching the web for over six hours and after three phone calls, I discreetly and quietly and illegally ordered my 5 mg prednisone tablets from India. Sounds crazy. But I was desperate. Prednisone was the only thing that was keeping me from becoming bedridden. 

• That same April, 2013, a friend suggested her neurologist, and I made an appointment. He would be the third neurologist I had consulted since January, 2013. The previous two had no diagnosis for me, other than carpal tunnel.

• In May, 2013, that neurologist, who is my current neurologist, gave me my 3rd diagnosis: polyradiculitis. The treatment, until an underlying cause could be determined? Corticosteroids. No wonder the prednisone was helping me. 

• Polyradiculitis is a rare type of peripheral neuropathy in which multiple nerve roots are swollen at the spinal cord. My nerve roots that are effected are the lumbar and cervical nerves which extend through both lower and upper limbs and extremities and can also cause symptoms in the neck. Like other types of peripheral neuropathies, there is no cure for polyradiculitis, unless an underlying cause can be found and treated. Until then, the patient figures out how to manage as best they can. Polyradiculitis can produce some symptoms that mimic ALS.

• In May, 2013, I began receiving steroid injections in the base of my palms.

• From mid-April, 2013, through December, 2013, I received acupuncture on an almost weekly basis. I also consumed herbs compounded specifically for my condition.

• The nerve damage continued to slowly spread and worsen.

• In August and September, 2013, I had to downsize my pet-sitting business by around 90%.

• In January, 2014,  we quit the palm injections and I began receiving spinal injections: a steroid lumbar epidural and steroid cervical neck shots. It was like night and day; I awoke the next morning and could make a fist for the first time in over two years. I got good relief for 4 weeks and then the effects would begin to wear off. I received epidurals and neck shots about every 6 weeks between January and July, 2014. Then, for insurance and medical protocol reasons, I had to go to every 12 weeks. Since July, 2014,  I have continued to receive them about every 12 weeks. Without them, I'd be bedridden. But even with the epidurals, my symptoms slowly continued to worsen and spread. (Steroid injections generally have less systemic side effects than oral steroids. But I still need daily, low dose, oral steroids to keep me functioning between epidurals as the effect of the injected steroids wears off.)

• In latter May, 2014, I began researching the medicinal benefits of cannabis, especially regarding neurological disorders. On May 19, 2014, my path had crossed with "Jason (trail name Rising Tide), who was in process of thru-hiking the Appalachian Trail. In 1999, Jason was injured in an auto accident and suffered a severe spinal cord injury which left him paralyzed, a quadriplegic. Doctors told him he was permanently paralyzed; he would never recover. Fortunately, they were wrong.  He attributes his recovery to time and "lots of weed." I was almost speechless as he shared his story with me. In my mind, I have recounted, that encounter, countless times.

• In January, 2015, I added the medication hydroxychloroquine (Plaquenil) to my daily regimen and have continued to take it.  The only other daily pharmaceutical I currently take is prednisone which I've been taking since July, 2011. I occasionally need a hydrocodone and occasionally, alprazolam (Xanax). I swallow around 28 pills a day. Most are supplements to address immune function, nerve damage, and side effects of medications.

• On May 22, 2015, I received an email announcing that the Stanley Brothers CW Botanicals had begun shipping Charlotte's Web™ Hemp Extract to all states except Florida and New York. Charlotte's Web™ is a cannabidiol-rich hemp strain. 

• On June 10, 2015, as a six-month experiment, I added Charlotte's Web™ Hemp Extract to my regimen. I began to feel incremental, slight improvement on June 15, 2015. As of this blog entry, I am still improving. 

• Beginning in July, 2015, I have slowly felt my muscles regaining ability. I began to feel my thigh muscles working. I began to be able to lift my arms with less assistance.

• From July 1, 2015, through the current date (November 10, 2015), I've been able to manage symptoms with lower daily doses of prednisone compared to my daily doses from July, 2011, through June 30, 2015.

• In mid-July, 2015, my blood tests revealed that I am vitamin B6 toxic which can also cause nerve damage, muscle weakness, fatigue, appetite suppression, and heart burn; all of which I manage. I have since adjusted my diet endeavoring to lower the B6.

• In August, 2015, for the first time since I started being tested in 2013, my nerve conduction study and electromyography tests showed that the nerve damage is no longer progressing and has, in fact, reversed course. My body, with a little help from friends, has stopped the progression. Better yet; it's correcting itself.

• From August 24, 2015, through September 21, 2015 (which were the last four weeks preceding my routine 12-week spinal injections), I did not experience the severe limb heaviness that I did in the previous "last four weeks" routines. That severe heaviness became one of my worst symptoms. As the medication from my every-12-week injections would wear off, I'd begin to feel like I had the weight of a dead body strapped to me, or like my limbs were filled with tiny magnetic slivers and the earth was trying to suck me to its center. The heaviness was severe. The dread leading up to those routine rounds of "last four weeks" was almost as bad as the reality. 

• In August and September, 2015, my hand grip strength showed an improvement of around 37% compared to May and June, 2015. That put me at around 42% of normal. 

• In August and September, 2015, my walking speed showed improvement of around 85% compared to May and June, 2015. That put me at around 100% of the average speed of a sixty-year-old female. 

• In September, 2015, for the first time since I began receiving lumbar epidurals in January, 2014, my epidural made me sick. So sick, I had to go the emergency room about 24 hours after receiving the epidural. Consensus is, since I'm getting well, the medication in my epidural is now too strong. 

• In early October, 2015, I was able to clap my hands for the first time since the fall of 2012. 

• In October, 2015, I was able to stand up and pedal  on my bicycle for the first time since I started biking with nerve damage.

• On October 26, 2015, the nerve damage moved into the nape of my neck on the right side. I was very discouraged. A week later I had to get steroid shots in my neck. My doctor encouraged me to not be discouraged; it's just a side track and not unusual for the nerve damage to move there next. 

• As of November, 2015, it appears the Charlotte's Web™ (CW) is helping significantly. As stated above, I began to notice improvement 5 days after starting CW. Another factor that may be involved is hydroxychloroquine which I began taking in January, 2015. That drug can take up to 6 months to start working. My gut feeling is that CW has been like a linchpin, adding a missing ingredient that has catalyzed my endocannabinoid system to start working more effectively which may be producing a synergistic effect for other systems to also work more effectively.  I am continuing to slowly regain function in my limbs. How much I will improve and for how long remains unknown. I have been and still am keeping notes and records. 

• My next epidural and neck shots are scheduled for December 14, 2015. The medication dosage in the epidural will be lower than previously. It will be my 10th epidural since I began receiving them in January, 2014. It will be beyond my dreams if I do not need that epidural. 'Til then, I'll just keep doing what I'm doing.

Timeline update: 11/10/15 - 12/23/15

• On November 24, 2015, the nerve damage moved into my lower back and up my spine on both sides. It spread upward for about two weeks, stopping below my shoulder blades. I have not had shooting pain; but rather, lots of weakness and strain-type pains.

• Around that same time (the week of November 23, 2015), which was post-epidural-week number nine, my overall symptoms worsened which is the normal pattern between epidurals. I was hoping that this routine pattern might not happen this round and that I would be able to at least delay the December 14th epidural. I was quite depressed with the increase of symptoms confirming that I would need that epidural. But, even with the increased symptoms, comparatively speaking, I guesstimate that I was still around 25% better compared to post-week nine in June, 2015, and probably 10% better compared to post-week nine in September, 2015. If not for the nerve damage spreading to my neck and back in October and November, 2015, I would have estimated that I was 40% better compared to June, 2015. Again, just like the previous round in September, I did not experience the "last four weeks" severe heaviness. That is encouraging, to say the least.

• On December 10, 2015, my six-month Charlotte's Web™ Hemp Extract experiment which I began on June 10, 2015, was over. The improvement has been significant. So I will continue taking Charlotte's Web™ and assessing.

• On December 14, 2015, I received my routine 12-week epidural. Due to my improvement since adding Charlotte's Web™ (CW) to my regimen and because my last epidural on 9/21/15 made me sick, my neurologist reduced the medication in my epidural by 50%. (That is HUGE!) Around March, 2015, I had asked the neurologist if we could increase the amount of medication in my epidural to maybe give me more and/or longer relief. He responded, "No. You are as high as you can go." And now, at the end of my six-month CW hemp extract experiment, that same medication which I had previously asked about increasing was decreased by 50%. It really is a big deal. December 14, 2015, was my 10th epidural since January, 2014.

• How am I faring on the 50% reduction? I estimate that I'm receiving around 70% to 80% of the relief that I normally have by this time after my epidural. Not bad, since I had a 50% reduction in medication. I do miss the larger relief, and the comparative 70/80% relief has caused me some discouragement and depression. But, I'm handling that and adjusting and getting 'back on my game.' It will be interesting to see how I fare as the effects of this epidural wear off.

• My next neurology appointment is on Monday, January 25, 2016, to get shots in my neck if I need them. My next epidural will probably be on Monday, March 7, 2016. 

***
Between 2011 and 2013 I consulted at least eight different medical professionals before finding my current neurologist. Some of those consults were helpful; some weren't. A few were harmful. By the time I found my current neurologist, I felt I had to be my own defense attorney.  If he didn't 'hear' me, I was ready to hire a patient advocate. Thankfully, he did hear me and continues to help me manage the condition.

I could write multiple rants regarding a medical practice/system that requires patients to jump through multiple hoops proving they really are in pain when they are just trying to figure out what's wrong and how to get relief. That story line is far too common in the USA's outrageously expensive, insurance run, medical industry.