Difficulty Living With HIV And Neuropathy A Personal Account

Today's post from healthygaylifestyles.com (see link below) is a powerful personal account of living with HIV and AIDS (including severe neuropathy) in 2013. Not everybody sails through the rest of their lives on one HIV pill per day and very many people still have problems from side effects, or damage from earlier medication regimes, or from secondary conditions brought about by the virus itself. This account is a reminder that even with neuropathy in your life, you may still count yourself lucky that things are not a whole lot worse. Well worth a read.

Anatomy of An Illness (Part 1)
by Roger Goodman M.Div. Published on August 1st, 2013 | by Healthy Gay Lifestyles

I have not felt at all well for the last three weeks. I am running a low-grade fever of 99.5-100.2. My normal temperature is 97.1, so going up to 99.5 – 100.2 is , for me, running a fever. I am sweating all over my body with a permanent sheen of light sweat covering every inch of me. Along with the sweating I also have chills. I am also itching like crazy all over my body but the worst part is on the top of my hands and around the tops of my ears on my head. I just feel lousy and I don’t know what is going on with my body so I am a little freaked out. I always get a little freaked out when I begin to get sick, because I don’t know what it is going to lead to. The last time I felt sick it ended up to be severe sepsis that required a stay in the ICU. I don’t want that to happen again. I just wish something would break, either get sicker and need to be hospitalized or get completely well at home and not have the low-grade fever, headache, weakness in my legs, severe body pain, and itchiness that is part of what’s bothering me. I am so depressed and I don’t know if it is because I feel sick and cannot sleep during the night, or if I cannot sleep during the night, because I am depressed. I don’t know which is the catalyst for which.

Living with AIDS is a terrible thing. The consensus is that AIDS is over, that the epidemic is a thing of the past, but I and my friends who live with the disease know better. We get very sick from odd infections that always seem to need hospitalization. This never happened before I was diagnosed from my first opportunistic infection in 1995-96 when I had Herpes Simplex Virus Encephalopathy and went into a ten-day coma and died, but from which I came back to life. I slipped into the coma on Christmas Eve, 1995 and woke up ten days later in January 1996. I came back from death because I had much transformational work to do with the Queer community. My book and my film are important parts of that work. I completely missed Christmas and New Year’s Eve that year (my chosen family and I celebrated Christmas after I woke up from death and was back to a regular room in Unit 371 at Advocate Illinois Masonic Medical Center, the incredible AIDS Unit during the 80′s and 90′s which became my second address for seven years). For those years I fought for my life against deadly infections, including Kaposi’s Sarcoma for which I received radiation treatments and chemotherapy for three years. That all ended in 2002, but since then I have been hospitalized probably twelve times with various pneumonias, bouts of severe bronchitis, and COPD as well as general, critical bacterial infections. These come and go, but there is the ever-present Parkinsonism that fells me on a daily basis. My neurologist says I have it because of the trauma to my brain from the Encephalopathy. So, I take medication and use marijuana medicinally to stop the tremors, the rigidity in my joints, and to improve my cognition, but I still have a hard time using eating utensils and writing. My handwriting is illegible, so I type everything I have to write and when that is impossible I use Dragon for Mac, a voice recognition software, to speak what I have to write.

The pain in my feet from the peripheral neuropathy is excruciating today. The surfaces of my lower legs and feet are completely numb to the touch and simultaneously feeling that I have 1000 wasps stinging my feet all at the same time. It is like having searing hot coals sewn into my feet and people don’t understand why I have such a hard time walking. I don’t yet need to use a walker, but I cannot walk without my cane and CROW Walker for my Charcot Foot (Google this if you like-it is a most amazing device) and it allows me to walk. Without it I cannot go out. I’m so tired of hearing that AIDS is over now that the miraculous medications are available. That’s just a lie. It’s a way for people to feel safe in the midst of this scourge which still hangs over the face of the earth. Plus, the side effects (the effects, really) of the HIV meds are truly terrible. The medications are highly toxic. They are a form of chemotherapy, except they are taken orally rather than being infused intravenously. I’m in recovery from drug addiction and have been clean from drugs for the last 8 1/2 years since February 5, 2005, but now that medical marijuana is going to be legal in Illinois I don’t have to worry about getting busted. Todd, my loving and brilliant physician, can prescribe it for me. I don’t believe that using medical marijuana in any way affects my recovery program nor does it change my clean date. I will use marijuana purely as a pain reliever of physical body pain and to loosen my joints, not emotional pain or spiritual pain and certainly not recreationally, just the pain from the neuropathy and the Parkinsonism and the general overall pain in my body from having lived with this virus for 31 years.

My neurologist says that my loss of short-term memory, me acting out my dreams, the nightmares that are filled with darkness and terror when I can manage to sleep at night, carrying on conversations with phantom people just as I am falling asleep, as well as the loss of balance, confusion, the inability to hold a fork to balance my food and bring it to my mouth (hence I use a spoon for most things I eat), my depression, the rigidity and pain in my joints especially in my knees which is an insidious source of pain, my difficulty balancing on my feet, the weakness in my legs, the incessant fatigue and consequent incessant sleeping, and the terrible body pain are all consequences of the Parkinsonism. Perhaps using marijuana will alleviate some of the symptoms. It is powerful medicine. My brother is a licensed marijuana grower in New Mexico and he says that he has seen miraculous recovery from various illnesses in his patients including some skin cancers when applied as a cannabis oil.

I’m taking a break now. I’m tired and need to take a nap.

After a break in writing this, I am back. The break took longer than expected. I have to say that my wish above to either get sicker and need to be hospitalized in order to heal or get better at home came true, except it was the former wish that came true. I was going to take a nap, but instead ended up in the emergency room of the hospital I use. I was just discharged today having been admitted for an extremely elevated white count in my blood indicating an infection somewhere in my body (yet another one!!) and that has been what has been freaking me out this past three weeks . I saw Todd, my PCP (Primary Care Physician) in the hospital today and he discharged me because my white count issue has been resolved with IV Levoquin and he was afraid of super infection just from being in the hospital. I have to now take it orally for the next seven days. I was discharged this evening. I am so glad to be home with my dear Jerry and our children (our cats Murfee and Gizmo). Except for the intense fatigue, I feel so much better. The body pain from the infection (not counting the pain from the Parkinsonism and the peripheral neuropathy) is much alleviated and I can think clearly again.

This has been an extremely difficult year regarding my health: two pneumonia’s, two bouts of sepsis the first of which required a stay in the ICU for four days because I was so close to death and the second coming within twenty-four hours of being discharged from the first infection which was completely cured, removal of a ureteral stone which required two surgeries, excision of a squamous cell carcinoma on my scalp, a TURP (prostate surgery), and now this generalized infection. The TURP was not completely successful, however. I still have bladder pain when I urinate. I am seeing my urologist on Monday and I will see what he has to say. I hope I don’t have to go through another TURP. The consequences of the first TURP are not as devastating as I had anticipated. I can still have an orgasm (what a relief!), although it is dry. The sensations are there and the sex is great with Jerry, but there is no ejaculation. My entire body goes into intense orgasmic convulsions and my mind goes somewhere else completely. The depth of the spiritual experience with Jerry is complete but there is no ejaculation. Even without that, I experience “le petit mort” powerfully. Interesting, very.

Even with all these things that I have to deal with on a daily basis, my life is wonderful, creative, and productive. I am blessed to be alive so that I can carry on my work of writing and film making and, of course, to keep experiencing and living in my relationship with Jerry. I hope I have at least another twenty years of life and that Jerry does as well. We have much life to live fully and much loving to do. I am so grateful for my life. I live with my mortality every day, so each day is precious to me and Jerry is the center. Jerry is my rock. I am more than content with life. I have an incredible serenity and peace even with all the physical/psychological challenges I face on a daily basis. This is from my 12-Step recovery work. I am blessed, indeed.

___________________________________________

Roger Goodman, M. Mus., M. Div. attended Oberlin College during the tumultuous 1960s during the Civil Rights Movement and protests over the War in Vietnam. He was present at the watershed Stonewall Rebellion in NYC in June, 1969. He had an international career as a concert harpsichordist, teacher, and recording artist. He was on the faculty of The New School for Social Research in New York City, the American Conservatory of Music in Chicago, and the School of Music at DePaul University as Director of the Baroque Program, a post he held for 23 years. In 2009, Roger left the world of music to become a filmmaker. He is Executive Director of his 501(c)(3) corporation Tribal Elder Productions, NFP which he formed in 2010 and is the screen writer, and director for his documentary film “From the Ashes Risen” for which he is currently seeking funding through grants and the private sector. His new book is entitled, Thoughts of a Tribal Elder: One Queerman’s Journey From the Ashes Risen. Roger has been HIV+ since the early 1980′s and was diagnosed with full-blown AIDS in 1995 when he died during a lengthy coma, but, miraculously. he came back from death. He says the reason he came back was because he had important transformational work to do in the world for Queer people everywhere. His speaking and workshops on college and university campuses, his teaching/performing, his film, and his book are the fruits of that extraordinary journey with the Death Crone. A sex and drug addict in 12-Step Recovery, he has been clean from all drugs and sexual acting out for 8 years, since 2005. He is thoroughly grateful to his Higher Power that his life was given back to him so that he could do the work he has been given to do with enthusiasm, humility, and unending joy. Websites: www.queerwitness.com and www.tribalelderproductions.org.

http://healthygaylifestyles.com/anatomy-of-an-illness-part-1/

Radiculopathy A Personal Account

Today's post from sarahbethrn.com (see link below) is a personal account talking about a form of neuropathy called radiculopathy, which generally stems from nerve entrapment in the spine. (There is no connection to HIV mentioned.) Just as with all neuropathies, the symptoms can lead to severe pain and therefore the range of treatments most of us are familiar with. In Sarah Beth's case, her problems with the insurance company in trying to find the best treatment for her, may ring bells with some of you.

Radiculopathy and Pain Management
SarahBeth RN FEBRUARY 5, 2013

“Radiculopathy: refers to a set of conditions in which one or more nerves are affected and do not work properly (a neuropathy). The emphasis is on the nerve root (radix = “root”). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.” (Wikipedia)

Part of my autoimmune problem includes radiculopathy. I have had pain since the beginning (November 2011), and in fact, my neurologist related a problem I had 3 years ago with a radicular pain to this disease process. Recently, the pain has been getting progressively worse. Today, the worst is the L5 nerve root. It initiates in my lower back and travels down the front of my leg to my knee and most recently to the heel of my foot. This has caused weakness and immobility of my leg eliciting yet another ER visit and multiple followups.

I had another EMG done on my leg. This test tells us whether or not there is an active disease that is damaging the nerves–this is hard to explain. Previous EMGs have showed chronic changes in the L5 nerve root, but no acute damage. This means that the nerve was damaged at one point with disease, but there is nothing new going on. This test was no different.

Basically, the neurologist thinks the autoimmune process is progressing and causing the worsening of the pain. Then comes the long trial and error process to find a medication that helps the pain. I am already taking the maximum dose of an expensive nerve pain medication called Lyrica–so a neuropathic medication is not an option. I tried Sinemet , a drug typically given to people with Parkinson’s disease to reduce tremor. The problem with this medication is that it can affect the autonomic nervous system–which it did in my case, and caused worsening of my autonomic dysfunction. Next, I tried Baclofen, a muscle relaxer typically given to people with MS. This also worsened my autonomic dysfunction. Finally, just this past weekend, I was able to begin a medication called Nucynta–a pain medication that works through multiple pathways to reduce pain and is especially effective with nerve pain. This medication is also very expensive and was denied by my insurance company 4 months ago. My pain management specialist worked hard and got the medication approved. Luckily, I have experienced some relief from the pain with this medication (FINALLY).

What is frustrating is that my doctor prescribed this medication 4 months ago and I was unable to take it because someone behind the desk at my insurance company decided they would not cover it. Even though I am incredibly thankful that I am getting some relief, I can’t help but wonder what the last 4 months would have been like without the terrible pain.

Still waiting on the effects of the immunosuppressant and the decision for IVIG or not.

http://blog.sarahbethrn.com/2013/02/05/radiculopathy/

Idiopathic Neuropathy A Personal Account

Today's post from blog.donnawilliams.net (see link below) is a personal account of one person's experience of being diagnosed with idiopathic neuropathy (no identifiable cause) and it asks the question, 'could her neuropathy be linked to food intolerances and is there anything to be done about it?' It's a very good article; well researched and full of things for us all to think about. Well worth a read if you're interested in comparing your own circumstances with that of someone else but it's worth pointing out too that not everybody reacts in the same way to lifestyle changes, or even treatment changes but it's always worth knowing the options.

Idiopathic Inflammatory Peripheral Neuropathy and Food Intolerances  Donna Williams April23 2014

My journey with peripheral polyneuropathy has probably lasted my lifetime. It made itself known along the way but by 2009 its whisper was clearly audible, by 2011 it was shouting, by 2012 it was screaming at me. But what on earth had caused this autonomic then sensory, then by 2013 even the start of motor neuropathies?

I was born to an alcoholic who had attempted (failed) abortion twice with Quinine so peripheral nerve damage right from the start may well have been probable. By six months old I had recurrent infections (later diagnosed as primary immune deficiencies) and a number of viruses that could have caused it. I may have inherited salt wasting from my father and certainly did inherit a collagen disorder from my mother. Did I have symptoms of autonomic, sensory or motor neuropathies in early childhood? Autonomic, certainly, sensory, on and off, motor, maybe, episodically at different times throughout my life.

The closest we came to understanding why my polyneuropathy got to the level its now at was the theory that my collagen disorder – Ehlers Danlos Syndrome – had played a part; that collagen protects myelin which protects peripheral nerves and mine is degenerating. Another specialist suggested my autonomic neuropathy had developed as a result of chemo. But being immune deficient all my life, I wondered if this also played a part, particularly as I’d had Chicken Pox, EBV and Herpes Simplex 1 (cold sore virus), all of which have been linked to peripheral neuropathies. And what of salt craving and my dramatic improvements when on high sodium intake? I knew chemo had tipped the balance and that Tomoxifen was implicated. But how to make sense of the puzzle, the fruit salad?

I could have accepted the word ‘idiopathic’ but maybe that’s just a word people have when they cannot find the ONE cause. But what if that’s because there actually were multiple, cumulative causes?

For me, peripheral neuropathy was sensory, autonomic and finally motor neuropathies. It meant an ongoing fluctuating circus of stabbing and shooting pains in my toes and feet then up the back of my scalp with a scalp that would then hurt to touch, 10 months of pain so intense in my feet it made me cry to walk and hands that I’d wake to find immobile and clawed and stiff, surging pain running up my arms, tingling and numbness in my hands and feet, buzzing running up and down my legs, lips and tongue that lost sensation then turned burning with a permanent sensation of having eaten chillies and everything tasting like salt. It meant vertigo, nausea, temperature dysregulation, inability to sweat, urinary retention and frequency, nursing constipation, tachycardia, arrhythmia, hypopneas, bradypnea, central apnea (even during the day and requiring a ventilation machine at night), blood pressure and circulatory chaos, headache, somnolence. It meant first one leg collapsing, then the other then both, falling up steps, legs going to jelly then sudden surging heaviness making it extremely hard to even lift my feet. It meant waking to find I was like Tin Man struggling to straighten my arms or lift my arm up at the shoulder, getting up from sitting and walking like a 90 year old until I got going. I had times I couldn’t cope, other times I did what I could to wing it, keep myself involved with life, keep seeing my personhood, keep finding my humor, keep adapting. I couldn’t return to my old life so I started one that I could manage. I went to U3A as probably their youngest member, joined classes then became a tutor teaching art and then drama. It wasn’t just my body I had to manage, it was the impact of this circus on my identity and mood. I needed to keep celebrating life even if my body was haywire.

From the Oncologist diagnosing autonomic dysfunction during chemo, the sleep specialist diagnosing Mixed Apnea, to the cardiologist diagnosing Orthostatic Hypotention, to the Ehlers Danlos Specialist diagnosing EDS, to the rheumatologist diagnosing inflammatory tenosynovitis, to the Neurologist diagnosis small fibre neuropathy, slowly the answers came together. The final verdict went something like this…

Collagen protects the peripheral nerves, in an essential part of immune regulation and is an essential part of forming connectivity in the brain which related to information processing. As a person with the collagen disorder of Ehlers Danlos Syndrome I may already have had some level of altered neuro-cognitive development, immune dysfunction and autonomic dysfunction all associated with this collagen disorder.

Estrogen replenishes collagen. As women get into their forties collagen decreases. Chemo damages collagen and results in menopause. Following chemo I was put on estrogen blockers. This kept me in menopause and reduced my ability to replenish damaged collagen. Part of my immune dysfunction is immune deficiencies and food intolerances.

The immune deficiencies mean I struggle to fight off certain bugs, including HSV1 which can cause neuropathy. I’m also gluten intolerant and had returned to gluten in 2010 when the neuropathy began to diversify and worsen.

I was on B6 but following chemo took a magnesium supplement that also had B6 so my daily total was 40mg. The daily RDA for B6 is 1.5mg with max of 40mg. Excess B6 can cause neuropathy and mine was found excessive.

I had been gluten free from 2001 to 2010 but returned to gluten when I tested negative to an IgA celiac test and biopsy (I’m IgA deficient and had already been GF for 9 years at the time so these results would have been unreliable). But because it was hard to get gluten products that were also casein free, soy free and wheat free I had only low level gluten until 2013 when we found a vast range that fitted these requirements. And with that became such progressive worsening the gluten intolerance contribution to neuropathy finally showed itself in full glory.

This time the neurologist tested not IgA antibodies to gluten by anti-gliadin antibodies. Still negative to celiac. Nevertheless with a strong family history of celiac/gluten intolerance on my father’s side and confirmed IgA deficiency the neurologist still suspected I was gluten intolerant and that gluten was contributing (1 in 500 people are IgA deficient but 1 in 10 people with celiac are IgA deficient). So I went back off gluten, dropped B6 supplementation and increased Lysine.

Within two weeks of going gluten free my ability to sweat returned for the first time in 3 years since 2011. The daytime apnea/bradypnea that had been with me in episodes all my life and had got progressively out of control since 2009 then weekly since 2011 suddenly disappeared. The shooting pains up the back of my head (occipital neuralgia) and burning mouth (burning mouth syndrome) disappeared. The buzzing up and down my legs, falling up steps, the jelly legs, fatigue and surges of sudden heaviness disappeared. The ongoing headache began to dissipate and the nausea left. My elbows and shoulders freed up on waking and I could easily move them again. On standing up I could move without all the ‘rust’. Some of the stiffness was still there and I was still on the ventilation machine for Mixed apnea at night, but after battling it for 3 years I appeared to have finally lost most of the neuropathy.

The neurologist concluded that stiffness and slowness with movement were part of the Ehlers Danlos Syndrome. The night time Mixed apnea remained a mystery.

Then Chris and I went to a friend’s place. The served us snacks: green tea with honey, grapes, almonds, dates – things extremely high in salicylates. I ate these even though I knew I was diagnosed as severely salicylate intolerant in my mid 20s. I figured I didn’t have any acute symptoms at that point – no asthma, hives, migraine – so could wing it. Then next day the neuropathy flared. Burning mouth was back, headache, the stiffness flared, temperature was giving me grief, I needed to keep peeing. I realised it was not only the gluten intolerance that was aggravating the neuropathy, it was the salicylates.

So I spoke to my sleep specialist. Was it really possible that the neuropathies could have been chronic reaction to food intolerances and that because I was looking for acute symptoms I didn’t ‘get it’? Was it really possible I could be on the home stretch here? That if I returned to extremely strict low salicylate that I might get off the anti-inflammatories I’d been on since 2012 and maybe even overcome the night time apnea to no longer need the ventilation machine? He thought this sounded feasible. I asked ‘what happens to people who don’t work it out’? He said ‘sometimes they die’. I asked if the ongoing inflammation had contributed to me getting breast cancer or would make it more likely it would return. He felt it wouldn’t do me any favors to ignore it.

I was already legume free (I’m allergic to soy/peanut and react to other legumes) since 2010, casein and wheat free since diagnosed allergic to these in 1990, gluten free from 2001-2010 after being diagnosed as gluten intolerant and now returned to being GF, low/no sugar due to immune deficiencies and inability to fight candida. I had been low salicylate since 1990 when I was diagnosed through intradermal testing as severely allergic to salicylate/phenol and found to get hives and edema from aspirin. But with salicylates I lapsed a lot depending on who I lived with and how easily they accommodated my diet. But now it was time to seriously return to the dietary wheelchair. There would be no more compromising. I either wanted to get healthy and stay healthy and live with the least level of disability this body could muster, or I didn’t. In spite of being a committed autonomous non-conformist, I decided obedience for the right reasons could be a virtue.

After 10 days returned to extremely low salicylate I came off the anti-inflammatories. The neuropathy appears to be completely at bay with the exception of the ongoing nighttime Mixed Apnea. I have been watching the readings on the ventilation machine. The readings are gradually improving. Who knows, in 60 days I may know if I’m free of the machine and can fall asleep and continue breathing without the machine. What a journey. Wish me luck.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

http://blog.donnawilliams.net/2014/04/23/idiopathic-inflammatory-peripheral-neuropathy-food-intolerances/

Neuropathy And Stem Cell treatment A Personal Account

Today's post from neuropathy.org (see link below) is a personal account of one lady's experiences with getting neuropathy. There is no link to HIV but as we all know, irrespective of the cause, our neuropathy journeys are very similar in terms of symptoms and treatment. It is especially interesting for those considering stem cell treatment but that option remains very limited, according to the skills available in your area and the extent of your insurance coverage.

More Than Hope
By Mary Busch 
 
Editor’s Note: Mary Busch—a patient in our neuropathy community—shares her on-going journey that started with a getting a diagnosis, a frustrating quest for effective therapies, and a ray of hope that came in the form of a clinical research study. We appreciate Mary’s contributions to moving the ball forward in neuropathy research, as well as her willingness to share her inspiring story!

Just ten years ago, I was a “regular mom”—working, taking care of my family and my home…and trying to squeeze in a few moments each day to stay in shape. Little did I know that an insidious neuropathy diagnosis was going to change my life forever.

After my husband Mike's company shut down in December 2003, he took up a job in Texas. We found ourselves relocating, leaving behind our family and friends and what we called home (Cincinnati, OH) for thirty-nine years. The first few months went by quickly: I was setting up a new home, making sure our kids adjusted, and looking for a new job…all of this was stressful—to say the least. It was during this time that I first noticed a "tingling" sensation in my fingers.

I’m sure you’ve felt it: the “tingling” when your hands get really cold or when you have your hands in one position for too long, you develop this "pins and needles" feeling. I didn’t really pay much attention to these symptoms because they were sporadic. But then it wouldn’t go away…and I began dropping things and I couldn’t explain it away (“Don’t mind me; I’m just a little clumsy today!”).

The "pins and needles" feeling was spreading to my toes and it was becoming more bothersome. So, I went to a primary care doctor for an evaluation. She didn’t seem all that concerned about the symptoms, but gave me a prescription anyway. For the first few days after I started this medication, I could not keep my eyes open. Even after consulting her about adjusting the dose, I just couldn’t shake the drowsiness. Since my doctor wasn’t too concerned, I stopped the medication and I ignored the symptoms. After all, I was a busy mom and life was calling--even through these seemingly benign and annoying symptoms.

In August 2004, I was eager to start my new job at Blanton Elementary School. The "pins and needles" feeling was still there, but I was functioning pretty much at a normal level. By November, however, I could no longer ignore the symptoms: the "pins and needles" had spread to my arms and legs, and it was accompanied by numbness and fatigue. This time I consulted a different primary care doctor who started testing me for simple things like vitamin deficiencies.

When I got back to Texas after our holiday season travel to Cincinnati, I realized that my symptoms were worse. I was staggering; I couldn’t lift my arms; and I was falling. It was the fall that had me landing on my face that made my doctor refer me to a neurologist.

My first thought--after researching my symptoms--was that I might have multiple sclerosis (MS). After many blood tests, EMGs, an MRI, and a spinal tap, I was diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy--an autoimmune form of neuropathy). I later found out I was lucky: for many in the neuropathy community, it takes years to get diagnosed and to have access to treatments. My neurologist, at the time, put me on high-dose steroids for the next year. Although my symptoms dramatically improved, the side effects (weight gain, swollen knee joints, hypertension…) were devastating. I was told my CIDP wouldn’t return after I completed the steroid treatment. My neurologist was right…I was symptom-free for about a year. But, then it all came back; this time, the CIDP affected every part of my body—not just my arms and legs. I had trouble swallowing, nerve pain, muscle twitching, and spasms. It also affected my voice, speech, and cognitive skills…the list of symptoms seemed endless. I knew I needed a second opinion. I sought out another neurologist, Dr. Anna Tseng, who reconfirmed the CIDP diagnosis. She started me on a loading dose of Intravenous immunoglobulin (IVIG) at an infusion center.

For the next six years, I went through many treatments. Intravenous immunoglobulin (IVIG) was the only treatment that seemed to stabilize my symptoms, but the side effects were awful. I had severe headaches, nausea, and vomiting. My infusions were slowed down to the lowest dose to help minimize the side effects. My life revolved around the four 8-hour-days a month being infused and the following week spent recovering from the side effects of IVIG treatment. I made several ER trips to treat the dehydration that resulted from extreme vomiting. I also developed aseptic meningitis. My school’s principal was wonderful through all of this, but I was taking more and more time off because of my health issues. I felt that with each CIDP relapse my baseline health was slowly deteriorating. It got to the point where I couldn't work anymore…this was one of the lowest points in my life because I loved my job.

I had trouble swallowing, nerve pain, muscle twitching, and spasms. It also affected my voice, speech, and cognitive skills...the list of symptoms seemed endless.
 
In 2010, we found ourselves relocating to Florida. I started working with Dr. Lara Katzin at the University of South Florida to manage my neuropathy. There was an instant connection…we worked patiently together to tweak my IVIG treatments over the next few months, but I continued to struggle with the side effects.

While on a family trip to Bryce Canyon in 2011, I felt well enough to do some hiking. But I paid for it after getting back home. I was tired and weak…I thought a few days of rest would help me recover. But by the end of the week, I couldn’t walk; I couldn’t get out of bed; I couldn’t shower or even go to the bathroom on my own. I felt completely distraught and humiliated that I was unable to care for myself or my family. I had to call my parents to come and help me with the basics while my husband was at work. I spent the next six months in and out of a wheelchair. I had a lot of time in that wheelchair to think about my uncertain future. Because I wasn’t tolerating standard therapies, I was ready to give up. It was at that point, I began researching other options.

I recently learned about The Neuropathy Association--this find probably saved my life. I joined the Association’s local support group (in Tampa, Florida) to help myself and learn from others who were living with neuropathy. I also learned about clinical research trials through the Association’s website...this is how I found Dr. Richard Burt (head of the Hematopoietic Stem Cell Transplantation in CIDP research trial at Northwestern University)--my miracle worker.

I spent a lot of time researching transplantations and all the possible complications from the procedure. I spent months on Stem Cell-Facebook pages reading about other patients’ experiences. Then in April 2012, I met Wendy Nash--a fellow Floridian--who was participating in the clinical research study that I was considering. Wendy shared her journey with me and invited me to see first-hand what she was going through.

After talking with Wendy in April 2012, I applied for the clinical research study. In June 2012, I went for an initial 3-day evaluation with Dr. Burt to reconfirm my diagnosis and to confirm I met the clinical study criteria. I was accepted into the clinical research study—and, for the first time, I had hope--hope that I could beat neuropathy.

In September 2012, I started the long transplant process at Northwestern Memorial Hospital in Chicago. The first part is pre-transplant testing (cardiac, pulmonary, chest x-ray, EKG, labs, etc.). It was an exhaustive list, but Dr. Burt and his transplant team were very thorough. They wanted to make sure my body could handle the stress of the transplant procedure. During my testing, they found a large cyst on my ovary. So, even before I began, I had to have the cyst (and my ovaries) removed. After a few weeks of rest, I went back to Chicago for the stem cell transplant.

I was scared even though I had done my research, but I knew I was in good hands. I was admitted for an initial mobilization chemo—to stimulate the bone marrow to start producing stem cells. I was released from the hospital the next day and soon began filgrastrim shots to further stimulate my bone marrow to rapidly produce stem cells. The goal was to make enough stem cells to spill out of my bone marrow and into my circulating blood for harvesting. Approximately 10 days later, my stem cells were harvested through a catheter in my neck by a procedure called apheresis (a process that spins blood and separates the stem cells from all the other parts of the blood). 

Now, I was ready for the main part of the stem cell transplant. Again, I was admitted to Northwestern Memorial Hospital in Chicago where I would stay for the remainder of the transplant. By this time, I was already losing my hair; so I shaved my head completely ... I thought it would upset me, but I was so focused on the next part of the chemo that it didn’t faze me at all. The next seven days were filled with chemo treatments. The chemo gave me headaches and made me nauseous, but the staff was really great about addressing these side effects.

Finally, the big day arrived: November 21st, 2012! My white blood counts were down to zero (Day 0--in the transplant world) and I would be getting my stem cells back. It was my “New Birthday!” My parents (my caregivers throughout my Chicago stay) and I had a little ceremony celebrating the occasion. I would like to tell you it was all uphill from there, but it wasn't: I developed a fever. Dr. Burt and his team were very proactive. They started me on antibiotics right away and took blood cultures. It turned out I didn’t have any infection. Some people just develop post-transplant fevers. I was still nauseous and I didn’t have an appetite to eat. Now, it was just a matter of waiting for my stem cells to engraft (or repopulate) my body with healthy cells. That happened 9 days later and I was able to go home. It was a grueling time, but I look back at it now and it really went by quickly. I've already had six months of my life back for that period of misery…I would do it again in a heartbeat!

The main reason I considered the clinical research study was to give myself a fighting chance…plus, it feels good to know I’m also contributing to research and I’m helping others along the way. Today, I still have pain and my nerves haven’t completely healed yet. My nerves may take years to heal, but I feel so much better. The constant fatigue is gone and I am walking two to three miles (yes miles!) several times a week.

Not everybody is accepted into a clinical research study and some health insurances will not cover it because the treatments are experimental. For me, participating in a clinical research study was the beginning of my future—one I could look forward to with optimism. Instead of planning for treatments every month, I am now planning vacations with my family. Most stem cell patients are treatment-free for years after the transplant. The doctors call it is a long-term remission, not a cure. Even if it is not forever, the hematopoietic stem cell transplant has bought me time ... time for research to catch up!

http://www.neuropathy.org/site/News2?page=NewsArticle&id=8488&news_iv_ctrl=1101

Neuropathy And Chemo A Personal Account

Although definitely not linked in any way to HIV, today's powerful article from macarisms.wordpress.com (see link below) brings home the effects of neuropathic problems often brought about by chemotherapy treatment. Unfortunately, people with HIV are not immune to cancers (that would be a nice side effect for a change!) and may get neuropathy from yet another source if they undergo chemotherapy. It's always powerful to read first-hand reports of how lives are changed.

Journey with cancer 6 June 2012 – the good, the bad and the ugly

Posted on June 6, 2012

Dear family and friends

I’m sitting on my favourite bed, in my favourite room, writing to my favourite people! We’ve just got home from another visit to our oncologist. These are always anxious times and I tend to get fairly stressed around each visit. We were keen to learn about the results of my CT scan on Monday and to talk about what happens next. I’d been feeling more unwell than usual over the past week and we had a few questions to ask.

The good news is that the primary lung cancer has continued to reduce in size. This is a cause for rejoicing and I thank God for the positive benefits of the chemo. The shrinkage is unexpected, given that I’ve been on a maintenance chemo program and we were simply hoping to keep things in check. Six months ago the tumour was 26mm in diameter and it’s now shrunk to only 12mm. It makes me wonder if it can’t keep getting smaller until it vanishes altogether! However, the oncologist doesn’t see this happening and there are other factors involved. Seems bizarre to be held to ransom by something the size of a marble!

The bad news is that there is now clearer evidence of metastases. The cancer isn’t all in one place. Nothing new since the last scans, but evidence of the spread of cancer nonetheless. It would be so good if all the cancer was contained in the one tumour and all they needed to do was operate. Just cut it out! No more cancer! Clean bill of health! Sadly, this isn’t my story. Chemotherapy is designed to attack the cancer wherever it pops up, even in the places you can’t see, and thankfully it seems to have been doing it’s job pretty well.

This brings me to the ugly. Chemo has it’s side-effects and they can be pretty nasty. I’ve catalogued the various symptoms previously. Nausea, constipation, aching, skin rashes, lethargy, and so on, are all pretty standard. At least I’ve got my hair! But, I’ve begun to experience another effect that we need to take seriously… peripheral neuropathy. I get a burning sensation on the soles of my feet and palms of my hands, and it’s been getting worse in the last week or so. It’s a bit like pins and needles and makes my feet and hands feel tingly, hot and heavy. I walked into town the other day and had so much pain in my feet that I considered getting a taxi home. It’s been very concerning because walking is the easiest exercise for me to keep up.

While not a common side effect from my treatment, some patients do experience neuropathy in varying degrees. If ignored, it can leave severe and lasting damage. It’s resulted in some people becoming housebound or confined to a wheelchair.

Our oncologist is concerned by my symptoms and he’s recommended we cease the chemotherapy for a couple of cycles to see if the neuropathy improves. This will mean dropping Alimta, but continuing with the Avastin (which is not a chemo drug). I’m learning more and more that my treatment is a balancing act. You get wins in one area while accepting losses in another. I just want a lot more wins than losses! I’d love to keep charging on, bashing the cancer as hard as I can cope with, but it seems that I’ve found one of my limits already.
If you’re one who prays, then please speak to God about me over the next few weeks. We’d love the respite in chemo to clear up any symptoms of neuropathy AND we don’t want the cancer to grow or spread in this period. I hope this isn’t too much to ask for!

Thank you again for your support and for sharing this journey with us.

http://macarisms.wordpress.com/2012/06/06/journey-with-cancer-6-june-2012-good-bad-ugly/

Personal Account Autoimmune Neuropathy

Today's post from rarediseaseday.org (see link below) is part of a four day series of personal accounts of living with neuropathy or diseases like it. One of the most difficult aspects of having neuropathy of whatever sort and from whatever cause, is the feeling of confusion you have because the symptoms are so strange. People get the feeling that they don't fit into any pattern they find on the internet and doctors often don't help by outlining what they see as the normal patterns of neuropathic problems when in fact, they are anything but normal. Reading about other people's stories can help enormously because you then realise that you're not alone in feeling the way you do. Neuropathy is a disease that defies stereotypes but the most important thing is that you find the best treatment possible for your own profile.

Autoimmune small fiber neuropathy 
Brooke - United States View more stories Published: 28 Feb 2014
 
My nightstand has over ten different prescriptions on it, more if you count supplements and things I only take as needed. I am nearly 30, a PhD student, and married to a wonderful man. I also haven't been able to walk much since the day after my 26th birthday, and since then the complications have only gotten, well, more complicated. Small fiber neuropathy, as I tell my doctors or anyone who inquires as to what is wrong with me, is a symptom, not a diagnosis. But just because I haven't managed to put a name to what is wrong with me, or get any test results to come up positive doesn't mean that the pain isn't there, keeping me from living my life how I used to. It started as a seemingly minor muscle pull sustained in a yoga class. I used to do all sorts of activities like kickboxing. biking, and yoga. I'd pulled muscles before so I wasn't concerned. Then home for summer, I rested it for a week or so before I couldn't take it anymore and decided to go for an easy bike ride around the park. However halfway around I could tell something was wrong so I turned around and rode slowly home. By the time I got there I couldn't put any weight on my left leg because of shooting pain in my quad.

I was sent to an orthopedist for what everyone thought was a muscle strain. He sent me to a physical therapist. She taped my leg in a way that only made the pain worse so that I had to cut it off of me (the tape not the leg) in the bathroom at work. Over the next week or two, it did not get any better. I had to walk around with crutches, even to and from the bathroom. One night I woke up hyperventilating from the pain and I knew there was something wrong. I went to the ER the next morning where they x-rayed and MRI-ed me, both negative. They looked at me like I must be the biggest baby in the world, and send me home with 10 oxycodone. At least it wasn't my driving leg, I reasoned. Meanwhile I had a trip to Italy that I had planned before any of this happened, and I was too stubborn not to take it. I had to ice my leg the whole way there to deal with the pain. I couldn't wheel my own luggage and use crutches at the same time. I made it through Rome and Venice on crutches. Most impressively, through Pompeii, though my fingers went numb from too much crutching around.

Weeks later and I still could not even take one step, the doctors determined it must be a nerve problem. I thought for sure I could now get some resolution and get back to my yoga and kickboxing. They gave me drugs for nerve pain and a TENS unit. Both of which helped a little but not much. All this happened over the summer. Now back living alone at school in Arizona the pain began to spread. First to my right quad. I was terrified. Then a few months later to both of my biceps. Finally to my hamstrings in what was a very frightening driving experience. I had to meet a thesis advisor and during my driving on the highway with a lot of stop/start traffic, I realize my hamstring is killing me every time I hit the break. I took the first exit I could, parked in a McDonalds, and called a friend crying to come get me. The last and most terrifying straw came when the pain spread to my throat and I couldn't even speak without pain. After that I moved home to St. Louis in what my mother calls my emergency evacuation. Thankfully the vocal chords resolved, but the rest of me didn't. One drug after another was added, and I the willing lab rat. What are the side effects? I didn't care as long as one of them was walking. My main doctor, a rheumatologist and wonderful doctor, determined that because, among other things, I responded modestly to steroids that this must be autoimmune. This makes sense in that I definitely have flares and then it calms down. But even in my most calm state, I can barely make it to the end of the block and back without awful pain. People ask me what nerve pain feels like, is it tingling, burning, stinging, stabbing, shooting, throbbing. But mine is all of those things at different times, in different places of my body. Often the answer is longer than I feel like explaining, so I just tell them that it's like I have an electrical problem. That seems to satisfy their curiosity.

Now, nearly 3 years after this ordeal started, where am I? Well on the one hand, the pain has pretty much spread everywhere possible, with few exceptions, although with the medications I am on, the overall level of pain is I'm sure less than it would be without them. I still can't walk very far, or do a lot of things I used to. I can't even open tight jars without a bolt of pain shooting down my arm. Since the pain spread to my arms I can't use crutches anymore and have to rely on others to push me around in a wheelchair. Most recently, it has taken away my ability to speak again with any volume at all since the pain is in my throat. I could barely speak on my wedding day. I worry that I will have a PhD and still no one will hire me because I can’t speak reliably. But to the average person, I may not look handicapped when I am seen walking short distances. My pride still makes me do silly things like push the limits of how far I can walk alone before I ask my husband to let me sit down. They may only see me walk from the car (with my handicapped parking tag) into the motorized carts at the grocery store. One woman even commented to me once that it looked like a fun way to get around the store if you don't feel like walking. She felt bad when I told her I had a nerve disorder. Hidden disability, I am learning, is a hard thing to deal with. Equally hard is unhidden disability. For example, I hate being in the wheelchair. First of all you're constantly at crotch level. Secondly, people don't know how to act around you - it's usually either like you don't exist, or like you have a mental disability.

But I am not trying to write an essay on how much it sucks to have a disability. Instead I want to focus on my treatment journey, and actually in a way how lucky I am. Both of my parents are PhDs and have their own laboratories. My father is also an MD and chief of hematology, while my mother is a biochemist. A lot of doctors sort of gave up on my case, telling me that ideopathic neuropathy happens and I will never find the cause so I just have to live with it and treat the symptoms. But my mother and my rheumatologist never gave up. And it was my mother every time who found the next drug that relieved my pain a little more. By now she has read so much of the literature in this area that she knows more about what is wrong with me than anyone else. She also paid to have all three of our exomes sequenced (an exome is the coding portion of the genome) to see if there were instances where maybe I got a recessive variant from both parents or maybe a de novo mutation in a gene related to pain in some way. That is what I mean when I say I am lucky. My father drew our blood, and my husband extracted the DNA and aligned the sequence reads. So far there are some promising candidates including a sodium channel and an opiate receptor, but it is a lot of information to go through, and hard to determine both false positives and false negatives with absolute certainty.

I am not certain that this will ever go away, but I know that if I am ever able to walk or do any other activity normally again, it will be because of my parents and my husband. I thought at first that it was contrived to be like most other people going through any type of suffering from health problems, and try to attribute meaning to the suffering. After all, the why me attitude never gets you anywhere. But it is true that I do feel a responsibility to other people who are not as lucky as me and don't have family in the medical field who can both afford all my drugs and testing, as well as research my condition themselves. Small fiber neuropathy can be caused by many things: diabetes, MS, Guillan-Barre, many things that I don't have. But there are a percentage of cases that remain ideopathic. The hardest part of this illness for me, aside from the pain in my entire body, is not knowing why. Not having a name to call it. Even though it might not guide treatment, there is a certain peace that comes with a real diagnosis. So my hope is that my fortunate surroundings, and my willingness to be a guinea pig will result in the discovery of something that will take the ideopathic part off of the neuropathy for others in my position. Aside from a cure for myself, that is what I want. That and a first author article in the New England Journal of Medicine. 

http://www.rarediseaseday.org/stories/164

What Chronic Pain Does To A Person Personal Account

Today's post from kevinmd.com (see link below) is a very recognisable personal account of living with chronic pain. I'm sure many people with severe neuropathy, will be able to identify with what this lady is describing and maybe add some of their own 'regrets' to the list. Sometimes just reading about other people's lives with the same health problem helps put things into perspective  and therefore deal with it better. Worth a read.

What chronic pain and illness make me miss the most
TONI BERNHARD, JD | PATIENT | MAY 30, 2013


When I began to gather my thoughts for this piece, I asked my husband what he thought. It was eye-opening. Even after twelve years of illness, I forget that his life has been impacted as much as mine by my health limitations. This is partly because he’s changed his major task in life to that of caregiver and partly because we can no longer do most of the things we liked to do together. So this list applies to caregivers and loved ones too.

Two preliminary notes. First, I’m trying to keep a non-complaining tone as I write. Complaining does me no good. These are factual observations and I hope they come across that way. Second, it’s good to remember that there’s a tendency to rewrite our past and put it on a pedestal: “Those were the good old days.” But, in reality, my life before I got sick was a mixture of pleasant and unpleasant experiences, good times and tough times. For example, you’ll see “Time in Nature” on my list of what I miss most. But being outdoors when the mosquitoes were biting or when it was over 100 degrees (F) in the shade…that I don’t miss!

1. The ability to be spontaneous. My guess is that this is #1 on most people’s lists. Having to painstakingly plan everything out is not particularly fun. Having to then impose it on others is never fun. A few months ago my brother and sister-in-law drove from about an hour away to have dinner with us. But we couldn’t just say, “Come in the afternoon and we’ll visit and then eat a leisurely dinner,” because that won’t work for me. If I visit in the afternoon, I won’t be able to join them for dinner. And if they only come for dinner, it had better be an early one because I turn into a pumpkin at about 7:00. So they came at 4:30 and we ate dinner at 5:30. It was great to see them, but there was nothing spontaneous about the occasion—at least not to me.

If people unexpectedly call and say they’re in town and would like to come over for a bit, whether I can visit depends on the timing. I can’t get through the day without a nap… and then there’s that turning into a pumpkin in the evening that I referred to. Sometimes when they arrive, I find myself rushing off to the bedroom, as if I’m hiding out from them. Hiding out from people I want to see can be emotionally wrenching. Our house is small enough that, once I’m in the bedroom, at least I can lie on the bed and listen to everyone talking so long as I leave the door open. But that can be frustrating and painful when the conversation turns to something I’d like to participate in.

Then there’s the lack of spontaneity to be able to do something on the spur-of-the-moment, and this definitely impacts my husband. “Wow. Lincoln is playing in town. I’d love to see it!” But then comes the dose-of-reality voice in my mind: “Nice idea but it’s 2 1/2 hours long, so with the previews and ads, that’s closing in on three hours—much longer than you can sit up for. When you face that kind of wait at a doctor’s office, you have to ask for a room to lie down in. Must let Lincoln go I’m afraid.”

2. Variety. They say variety is the spice of life. My spice rack is pretty empty. I’m not complaining. It’s just the way things are. I know how fortunate I am to live in a comfortable house with a loving partner, but the fact is, every day is much the same for me and, some days, that “sameness” can get me down. My husband and I don’t even have the questionable luxury of dealing with variety in my health issues! Conversations between us about my health are always the same since it’s remained almost unchanged for a dozen years.

I miss the variety that comes from seeing different people. As a teacher, I used to stare out over a sea of as many as 100 different faces at one time. And when I wasn’t in the classroom, I was a people watcher. Sometimes at restaurants I’d imagine a “back story” to the lives of those I’d be watching. Now I pretty much see the same people every day…and I know their back stories!

3. Being actively involved in the life of my family. My children are grown but I have two granddaughters. I miss going to events at their schools and to recitals and the like. But mostly, I wish I could take them on little outings. A month ago, my husband took the hour drive to our granddaughter’s house for the sole purpose of taking her across the Bay Bridge to ride a cable car in San Francisco.

That’s what I miss.

4. Socializing. The peak hours for socializing coincide with when I’m “down”—noontime (I’m napping) and evenings (I’m that pumpkin). And we’ve found that a partner doesn’t get invited over to dinner when the other partner is sick. Were my husband single, we feel certain he’d get those invitations. We don’t judge others negatively over this because we recognize that they may think he wouldn’t want to come alone, or they may feel uncomfortable about leaving me out. But the fact remains: he has almost as limited a social life as I do.

What I miss most about socializing is something I wouldn’t have predicted. I wrote about this in my book How to Be Sick: I miss those moments afterward when my husband and I would “debrief” each other about what transpired at a gathering—gossipy though it might be. Who drank too much. Who was such a kick to talk to. Who we might want to invite over. Who we’d be happy never to see again! Now we do that kind of sharing over characters that show up on our TV. Really!

5. Time in nature. Some of you may miss the wilderness. My time in nature was more “tamed.” I spent a lot of time at University of California—Davis’ Arboretum. It sits next to the law school building where I worked, and I walked the paths that line its creek almost every day. I knew almost every plant and tree and how they look during each of the four seasons. I knew where the little green heron would be watching for fish and where the turtles would be sunning themselves on the banks of the creek. I didn’t miss my walk even if it was pouring rain. I had a big umbrella and special shoes for the occasion.

6. The ability to pursue my former interests. Perhaps you were an active outdoors person or an avid moviegoer or politically active. One of my favorite pastimes was bird-watching. I had a little journal in which I recorded each sighting: the place, the day and time, the type of bird. From a friend who was an expert birder, I learned that the best way to identify a bird was to look for and then memorize some unusual feature. I’d do that and then when I’d get home, look in one of my many bird books and, with that feature in mind, identify the bird. If I couldn’t find it, it went down in my journal as an LBJ, a designation taught to me by another birder friend: Little Brown Job. I still bird watch but my sightings are pretty much limited to what I see from the house: house finches and white-crowned sparrows in winter; doves and robins in spring; a quick fly through of cedar waxwings if I can catch them; scrub jays and the occasional mockingbird year-around.

Scrub jays are so common in California’s Central Valley (we call them scrubbers) that I forget just how stunning they are. Sometimes, I pretend that I’ve never seen one before, making it a rare sighting. When I do, I’m amazed at the incredible beauty of this bird with its iridescent bright blue and silver coloring. Never mind that its squawking can drive a person to drink (if I drank…)

7. The ability to putter around the house, engaging in pleasurable tasks. I loved to garden. Now, I occasionally transplant something. But most of my gardening is confined to pulling weeds because they’re what inevitably stare at me when I go outside.

I also loved to paint rooms. (Perhaps this was a holdover from my days as an undergrad in college when I painted houses in the summer.) This was one of my joys as a homeowner: paint a room one color and then…paint it another! Now I’m in a bedroom that badly needs painting (as well as a new rug), but I haven’t the ability to do what needs to be done for the preparation and then the disruption. The rug can bereplaced…but can I handle being displaced? We’re considering it.

8. Health not being the topic of conversation. I miss not having my health be the elephant in the room whenever I’m around other people. Invariably (and often due to my own tendency to “drift” in that direction), the conversation turns to my health. I miss not thinking about it and I miss not talking about it.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

http://www.kevinmd.com/blog/2013/05/chronic-pain-illness.html