The Janet Reeves Story
I have a difficult time keeping my thoughts in order so I hope my notes make sense to you. I am hoping that by communicating with you perhaps you may be aware of treatments that I am not. I have done everything that I am aware of to attempt to beat these diseases and stay alive for my family; however, lately, I have been having a difficult time staying positive and upbeat. I look forward to hearing from you and you may post my information in any fashion you choose.
In August of 2000 I became ill with a serious outbreak of herpes virus type 1 (HSV-1) that started on my lips. My family went to the beach and I developed more sores, became extremely tired and basically slept through most of the week. On Monday I went to work and had a serious sore throat start instantaneously. From that point, my illness became more serious until I had meningitis. I stopped being able to feel the left side of my face and throat. I believe that my immune system dysfunction was allowing the recurring diseases to progress and that it did not develop into an autoimmune disease until my body had been worn down by recurring illness and my genetic predisposition for autoimmune diseases allowed herpes to progress into a full blown autoimmune condition. It was not until February of 2005 that my toes started wiggling and I started feeling neuropathy pain that I knew my condition became autoimmune as well.
After the initial sickness which lasted a good two or three weeks, I developed a lump on the left side of my neck that was easy to see and feel but for which no doctor dared to biopsy because of its location to a blood supply. It felt like it was full of pus and very painful. It went on for months without any doctor able to fix the problem. Eventually, I felt a sharp feeling inside and the lump drained internally into my tissues. I know this is odd but from that point forward the disease progressed significantly and spread to involve more and more of my body, primarily on my left side and less so on the right.
Initially, I was diagnosed with an immune dysfunction problem called Common Variable Immune Deficiency. Also, I was diagnosed with Herpes Family Syndrome because I was unable to keep HSV-1 as well as EBV under control. I was a partner in a IT business so I felt pressure to get back to work but each time I did, I would make a couple of weeks and then I would be sick again.
I was being treated in Atlanta by Dr. Zurwaski, a well-known infectious disease specialist, and started receiving IVIG on a monthly basis. Although it helped with the muscle spasms and energy levels, it did not stop the recurring acute illnesses. In February of 2005, after a serious bout, I went to see her and my left leg was cramping and my toes on left foot were wiggling constantly. I couldn’t make them stop, nor could I recreate the same action on my right foot so I knew it wasn’t being done psychosomatically. Because Dr. Zurwaski specialized in HIV cases, she suggested that I stop seeing her because the acute diseases were continuing so she felt IVIG wasn’t the answer
It was at this point when the nerves to my left leg became involved that I am sure my problem went from one of immune dysfunction to autoimmune as well. I continued searching for answers on the internet but nothing and everything seemed to fit—if you know what I mean.
I stopped seeing all doctors out of frustration after seeing Dr. Zurwaski until October of 2005 when I went to a neurologist. My disease had progressed significantly and I was barely able to walk far at all. I was still working full time but I felt like I wasn’t going to be able to continue for much longer out of shear will. My muscles were hard as a rock and I was still having recurring acute serious illnesses. Dr. Trivedi, a neurologist that trained at Emory University, recognized that I had either Isaacs Syndrome or Stiffperson Syndrome because his mentor at Emory was interested in the disease. He immediately requested auto-gad antibodies, a muscle and nerve biopsy of my left leg, and numerous other tests. They all came out positive. I was diagnosed with Isaacs Syndrome/Stiffperson Syndrome, Axonal and Demeylinating Polyneuropathy, primarily motor. My initial symptoms included:
· Burning neuropathy pain in hands and feet/legs.
· Arms & hands numbness. ·
Constant muscle hyperexcitability from toes up to thighs—muscle contractions, contractured feet, muscle spasms.
· Constant curling of toes/feet.
· Joint and muscle pain
· Body jerks and tremors
· Discomfort along length of spinal cord
· Pressure back of neck
· Severe headaches run down back of neck/spine.
· Nerves left side of face/eye become painful, itching.
· Roaring Tinnitus · Frequent sore throats, sore tongue
· Fatigue daily
After about three years of the above problems, I developed encephalitis, which left me with more issues. As the illness progresses, more and more nerves are impacted and the organs that are run by those nerves no longer function correctly:
· Days of semi-comatose state, unable to wake up. (the sleep center of my brain is damaged)
·Loss of appetite (spasticity in my throat makes it difficult to swallow solid foods)
· Loss of menstrual cycle (autonomic dysfunction and hormonal dysfunction
· Sexual dysfunction from loss of feeling
· Constant urinary tract infection – caused by retained urine
· Urine flow slowed – Developed a neurogenic bladder due to nerve damage.
·Increased ostiation – I am unable to feel my large intestine and I no longer have motility to remove material.
·Increased memory loss/loss of cognitive thinking
· Decreased blood pressure – autonomic dysfunction.
· Decreased body temperature – autonomic dysfunction.
· Heart failure – autonomic dysfunction.
I went to numerous physicians and agreed to numerous tests before I found the right mix of physicians that understood my symptoms. I have multiple conditions that have decreased my ability to function. I can only guess at number of physicians but more than ten and less than 20. I was told everything from I am a depressed female so here are some antidepressants, to stop carrying my daughter on my hip, to I am exaggerating. Once I met Dr. Trivedi, in Fayetteville, Georgia, I was finally on the right medical path. Unfortunately, the answers I received weren’t as positive as I hoped for. I was hoping for a cure not a rare autoimmune neuromuscular disease with no cure. I live in Alabama now and I depend dearly upon Dr. Stephen Hankins, Dr. Tan and Dr. Hakmiller. The three of them understand my situation and take great care of me
I received several diagnoses; however, most were accurate in some form. As you know, many autoimmune patients have multiple conditions. I saw Dr. Shu Oh, at the University of Alabama, after being diagnosed by Dr. Trivedi, as he specializes in neuromuscular diseases and he seconded my diagnosis. A gene specialist, Dr. Henry Schroeder, did a full work up of my immune system and determined that not only did my immune system not function correctly but also I was predisposed for autoimmune conditions due to the HLA genes that I inherited.
My diagnoses consist of:
1) Diagnosed with Isaacs syndrome /Stiffperson Syndrome (immune system attaching CNS) increased auto antibodies to GAD/sural nerve biopsy/EEGs
2) pseudo cerebra tumor (brain & spinal cord swelling) CT scans
3) Autoimmune active axonal and demyelinating sensory and motor /nerve biopsy 4) immune dysfunction, IGG levels low, T-cell and B-cell don’t function correctly – genetic testing
5) Low white and red cell count – blood work
6) Herpes-family viral syndrome – unable to keep any of the herpes family in check – genetic testing
7) Ovarian cyst on left side - scan
8) Brian damage to sleep center causing excessive sleepiness & narcolepsy – constant fatigue from neurological disease – sleep studies
9) Constant UTIs and neutrogenic bladder from nerve damage - scan
10) Obstipation – Right hemicolectomy – redundant sigmoid colon. No longer feel large intestine nor have motility in area – autonomic damage 11) Menstrual cycle stopped– sexual dysfunction and thickened endometrium – studies.
12) Benign meninginoma right side of brain - scan
13) Hormone levels are low - testosterone, progesterone, DHEA, estradol, cortisol, free T4, slightly elevated ANA, thyroid auto antibodies – labs.
14) Autonomic nervous system is dysfunctional causing low blood pressure, low body temperature, arteries have narrowed and heart is no longer functioning correctly.
15) Heart function is low, backwashes, one wall is soft and low blood pressure and low body temperature is due to heart function. Heart failure will occur eventually.
Prior to seeing Dr. Trivedi and receiving correct diagnoses, I was receiving IVIG from Dr. Zurwaski, the Infectious Disease Doctor in Atlanta. However, she did not know what she was actually dealing with so my condition wasn’t treated completely. Also, she stopped treatment in February and I did not start back again on IVIG until November of 2005. During that time, my condition deteriorated significantly.
Dr. Trivedi started me back on IVIG every 4 weeks for years. Over the years I have tried every medicine available, Baclofen, Carbazamine, Neurotin, etc. He also recommended that I see Dr. Shu Oh at UAB for a second opinion and he was in agreement. It appears at this point that we have two treatments: IVIG or Plasmapheris. I have tried both and can say that Plasmapheris worked the best for me.
In September 2009 my blood count was extremely low, and my doctor sent me to see Dr Tan, an oncologist/hematologist. Although he was unfamiliar with my disease, he recognized the significance of my blood counts and studied my conditions. I started receiving plasmapherisis immediately. It made a significant difference in the beginning. But now that my heart is involved, I question whether it is worth the pressure the treatment puts on my heart to continue to receive them. Also, I am away from my family for two weeks and I do not like being away from them for so long.
My life has no resemblance to the active and fulfilling lifestyle that I was fortunate enough to experience prior to developing a series of chronic and debilitating conditions. Prior to being stricken, I was a certified software consultant and partner in an information technology-consulting firm. My average day consisted of an early exercise class, getting children to school, working a full day, and then extracurricular family activities in the evening.
My career was technically challenging as well as rewarding as I worked with approximately 300 clients on an on-going basis, providing troubleshooting, software conversion, training and guidance as necessary. My specialty, data conversion, required strong concentration and memory skills—two skills that are drastically reduced. I worked in my office as well as on-site at client’s facilities.
My immediate family consists of my husband of almost 25 years, Jim Reeves, and our three daughters: Jessie age 22 soon to graduate from Auburn University; Jaida age 16 and a junior in high school and Jordan age 11 is in the 5th grade. Previously we were a very active family, enjoying outdoor activities such as sports, deep sea boating, hunting, swimming, and socializing with family and friends. As my condition has worsened my inclusion in family activities decreased to where I am no longer actively involved.
I have always been a very active individual. The inability to be productive on a daily basis is depressing. Daily, I must deal with extreme CNS muscle spasticity that results in my feet, toes and hands curling from contractions. Constant muscle spasms, body jerks, muscle and joint pain, nerve pain, and exhaustion make it difficult for me to get out of bed, get up from a sitting position, walk any distance, do routine household chores or care for my family.
Because of continual illnesses and progressive loss of function, my life has slowly become less productive—until now where my life feels non-existent. I am primarily housebound as I am unable to drive. I am unable to walk far. If I could wish for anything, of course, it would be to be healthy and have my life back. Previously, I was just hoping that we could slow the progression of my condition so that I can be a positive part of my children’s lives.
At this time there is no cure for my condition as I’m sure you know. It all started with an illness and then the toes on my left foot started wiggling constantly. It has been an ongoing and downhill progression from there. Initially, the plasmapherisis treatments helped; however, my autonomic system is now affected as well as the nerves to my heart so I am at a point of indecision. Do I put pressure on heart by continuing with these treatments or stop and go on to home hospice (as my insurance company would love me to do). Also, I was asked to prepare my funeral arrangements, which I have done. So I feel like the umbrella of life over my head is getting smaller and everyone is getting prepared for my death.
I no longer work, although I wish I could. I recently went to a senior center bingo game with my mother and enjoyed myself. What energy I have I spend doing simple things like preparing dinner for my family or watching one of my children play a sport. I do get on Facebook and keep in touch with family and friends as often as I can.
Janet L. Reeves