Date of Diagnosis: Summer 1998
Male – Present Age 73
In the summer of 1998, I developed a numbness and tingling in my feet: hot and cold, burning and aching sensation. I was referred to a Neurologist who performed several tests and pronounced Neuropathy, Peripheral Neuropathy, the idiopathic type.
After a few experimental treatments, the numbness progressed to more sever pain. My feet felt as though I was walking in fire and ice at the same time; like wearing a tight sock with sand in it.
I discovered that simply standing still was out of the question. I have to move, walk or sit. It seems that walking rapidly relieves the discomfort. I try to walk one or two miles a day. Ten to 15 minutes in the walk, the pain goes down. It feels much better. I guess endorphins kick in. I find that heavy cotton socks and soft shoes are best; soft slippers at home.
Since there is no known cure at this time for Idiopathic Neuropathy, medication can only relieve the pain somewhat. I tried several medications as prescribed, but the side effect of most were undesirable.
I tried Ultram, 50 mg, four times a day, every six hours. Ultram is the first drug I tried that takes the edge off burning and tingling. No unwanted side effects so far from Ultram. It makes the pain manageable. Since I take the last pill of the day at bedtime, by early morning I feel as though I am being visited by alligators nibbling at my toes.
My Neurologist is keeping abreast of my condition. Various tests are being performed to discover the cause in order to treat it. Nothing specific known at this time.
I have found valuable reading material through The Neuropathy Association and The National Organization for Rare Disorders. For a small fee, about $10.00 a year, they send information on other patients with similar conditions and what progress is being made in the discovery or treatment. I highly endorse these two non-profit organizations. The mailing address can be obtained from your neurologist or online.
Male – Present age 80
About mid 1995 I noticed a weakness in my legs when squatting. It was difficult to rise. I attributed it my age, then 76. It seemed to grow progressively worse. I just learned not to squat unless it was necessary.
Then, in mid-2000, I happened to watch a TV program when Dr. Aziz Shaibani was mentioned in connection with leg weakness. A woman guest stated she had relief from injections of Gamma Globulin (IVIg). I asked my physician, Dr. Ronald E. Sims, to refer me to Dr. Shaibani.
Dr. Shaibani ran some reflex, motor nerve conduction, sense conduction, muscle tests and several blood tests. He subsequently diagnosed my condition as Peripheral Neuropathy; not a problem of muscle weakness that may be helped by Gamma Globulin (IVIg) or other medications.
I have had two heart by-pass operation the latest in December of 1997. I mentioned this as I was on some heart medications, namely Amindorone and Zocor (a statin drug).
In turn, I stopped the Zocor for a six-week period, no improvement. Then I stopped the Amiodorone for five weeks. Still no improvement. I have Diabetes Type II, but have it well under control. The three symptoms are weakness, pain and loss of good balance.
I do not have the pain, but do have weakness and balance (have difficulty maintaining my balance and fall occasionally). I can walk unaided and can drive well (I think). Since I do not have the pain, I can manage well, if I watch my step and do not kneel or squat often. I have a heck of a time getting up!
I have, on occasions, had some discomfort in my legs in bed; not enough to call it pain if I put a pillow between my knees, it helps.
Swelling and Burning Feet
Date of Diagnosis: October 2000
Female – Present Age 73
After several visits with Dr. Patricia Lincoln in September and October 2000 for swelling and burning feet, I was diagnosed with Neuropathy. It was very distressful as I did not know the full impact of the condition upon my nervous system.
It is my belief that Neuropathy is directly related to the radiation and chemotherapy I received in 1998 for cancer. Unfortunately, no doctor will go on record agreeing with my belief. Doctors protect other doctors and the system of which they are a part.
My cancer has been in remission for two years. Dr. Lincoln referred me to Dr. Aziz Shaibani and my consultation appointment was in October 2000. An appointment was made for the EMG test which was “sheer torture,” but was necessary to determine the proper medication to be prescribed. Dr. Shaibani has been an absolute dear in his understanding of my condition and the patience he extends in communicating with me.
Because of his expertise in the field of Neuropathy, I now see Dr. Shaibani every three months. The burning sensation is now only occasional. Recently, however, a large insurance company turned me down for long term care insurance. The reason for the rejection was Neuropathy, not my history of cancer.
To my fellow Neuropathy patients, Be Not Dismayed. There is help available. It was a great day when I learned of Dr. Shaibani.
I am a 73 year old female, living in Spring, Texas.
Neuropathy and HIV
Male – Present Age 48
One summer day in 1998, I impulsively bought a cane at an antique store. How could I have known that I would actually need it to help me walk within six months?
That September I returned to work from a week long vacation cruise. As I dressed for work, the first morning back, my feet hurt a little. I chalked it up to wearing dress shoes after a week of flip-flops and going barefoot. But the pain steadily increased along with the sensation of my feet being asleep and I was not quite able to wake up from the numbness.
After a few weeks, the pain became so severe I could hardly walk. I would take my shoes off at work, but relief was fleeting, if not at all. I also became easily fatigued. I thought the cause could be a reaction to an HIV medication I had been taking for a relatively brief time. I went to see my HIV doctor, Mary Weinert, an infectious disease specialist in October.
She, too, believed the medication could be the cause and prescribed Elavil for pain. I had been under her care since February 1996, after being diagnosed HIV positive by my primary care physician.
His diagnosis was rather serendipitous and quite a shock. I had gone to see him for a general examination because I had barely survived a devastating apartment fire in which I inhaled a lot of intense, black smoke. I lost everything, including my car, except the clothes on my back and my cat.
The trauma of the fire was now compounded by the stunning HIV discovery.
He treated me for nearly a year for the HIV virus. It basically entailed taking AZT and monthly lab work. He referred me to Dr. Weinert in February 1996. Fortunately that was about the time the new HIV medication (Protease inhibitors) were developed and put on the market. Over the course of the next couple of years, I took a variety of drug therapies. Thank God, I had no serious problems from the virus.
There was no marked improvement in the Neuropathy with the Elavil, so Dr. Weinert referred me to Dr. Aziz Shaibani in November 1998. Following a lumbar puncture and EMG, he diagnosed me with CIDP, a rare neurological condition causing extreme pain and numbness in my feet, legs and hands. Initial treatment, including increased dosage of Elavil plus Neurontin and Vicadin, I underwent a series of steroid IVs in December 1998.
By then, I was in worse shape and in the most pain which extended through the first months of 1999. During the 1998 Christmas season and beyond, I could do little more than lay on the couch. I missed a lot of work to the point of not being able to work at all after the first of 1999.
There was no real improvement from the steroid IVs, so Dr. Shaibani prescribed a regiment of IVIg’s in early 1999. I began to respond favorably to the treatments and to show some improvement although I still suffered from the Neuropathy and pain albeit to a lesser degree.
Currently, I have the IVIg’s less frequently and take reduced dosages of the oral medications. Also in the summer of 1999, I had about eight sessions of physical therapy.
Today my lifestyle is much different than it was just a few short years ago. I was forced to take disability retirement from my job I loved and enjoyed in August 1999 at just 47 years of age.
However, I have learned that human beings are very resilient and can adapt to almost anything through a positive outlook and in appreciation of the fact there are always people much worse off then I am.
Of the myriad adjustments I have had to make, the one that looms largest is the loss of independence, particularly the ability to drive. It is frustrating to not be able to hop in the car and go to the grocery store, pick up prescriptions or drop in on family and friends. But I feel blessed to have the luxury of family and close friends who provide a physical and emotional support system for me.
I have learned to plan in advance even the most mundane tasks like grocery shopping – things we take for granted until something happens to us to disrupt the routines of our lives.
I have also learned that little things can make a big difference. The “prophetic” cane helps me with balance when walking a distance. Just a light touch or hold on a stairwell handrail or a shower grab bar helps me with balance than you might think. Being able to see the floor when pulling off a T-shirt or towel drying your hair surprisingly helps my balance equilibrium.
Because of the success of the treatments, I am now able to do simple tasks such as writing and turning magazine pages that I had difficulty performing at the onset of my condition. An assortment of simple gadgets can make life easier. A button puller makes getting dressed easier. Things like zippered jeans versus buttons – wearing sweats and jogging suits keep the stress of dressing to a minimum.
Dime store jar openers makes opening jars and bottles a snap. A potato peeler is a great little tool in opening cola cans. A hand held can/bottle opener can be adapted for many more uses than it’s intended primary purpose. A good pair of pliers is a life saver. Buying food products like butter, ketchup and salad dressing in squeeze bottles makes getting them opened a breeze. A case knife inserted between the top and bottom of those pesky plastic containers that hold prepared read-to-eat food items and can pop them with greater ease.
Leaving spray bottles of cleaners, shampoo containers, etc. in the open position eliminates repeated struggling and fidgeting. Getting them opened once and now it’s done.
Overall, I think the best coping medicine is to maintain a positive perspective and not fall victim to a self-pity party. We all must accept our lot in life and learn to live with it.
Even though my life will never be as it once was, I am grateful for the ability through medication to manage and live with Neuropathy and HIV virus with no serious complications over the past year. The HIV levels have dropped dramatically – even to undetectable levels at times – due to the medications.
I am a spiritual person and feel like we are dealt no more than we can handle at a time as difficult as it may be. Strength can come through adversity. It may be a cliche, but I believe it to be true. A new door can not be opened until an old one is closed.
Numbness to Bilateral Upper & Lower Extremities
Date of Diagnosis: October, 1999
Patient was initially seen October 1999, experiencing numbness to bilateral upper and lower extremities, severe at times. Patient began receiving IV Solumedrol per Dr. Aziz Shaibani. Patient experienced some relief.
Patient then began treatment of IVIg and received several doses. Between IVIg treatments, patient experienced severe muscle weakness at times. Patient began exercising regularly and walking 15 minutes daily increasing to 30 minutes then to an hour. Patient has noticed increased strength in muscles at times.
Patient also began changes in nutritional intake. Eats a well balanced diet high in vitamins and minerals. Eats plenty of fresh fruits and vegetables. Also, good fluid intake. Patient takes a variety of herbal teas and believes that it helps cleanse his system to avoid some of the symptoms he experiences.
Patient does diversional activities including fishing, hunting and other outdoor activities when he is feeling up to it. He believes keeping a stress free lifestyle helps to decrease exacerbations of the disease process. Patient also has a caregiver to perform massage to his extremities, especially during the times when he is experiencing the severe weakness. This has helped during the rough times.
Patient has a good support system. Family has helped him during the time he has felt the worst in his condition. Patient was seen April 11, 2001. He is ambulatory and is not using a cane. Patient has verbalized he feels better than he has in a long time. He believes that a person ought to keep a good attitude to overcome some of the obstacles of this disease.
Patient verbalizes that he thinks he might be experiencing symptoms of Chronic Inflammatory Demyelinating Polyneuropathy for years, but just always thought it was related to working too hard or stress.
He believes that a person experiencing the symptoms of severe weakness, numbness and tingling and things of that nature should be seen as soon as possible by a physician to try and help the problem.
Female – Present age 59
Neuropathy was diagnosed, but I cannot remember the date. My primary care physician, Janie Beauvais, first sent me to a cardio specialist to test my circulation. The results were that my circulation was very good. Dr. Beauvais then sent me to Dr. Aziz Shaibani because she thought my leg pains were from Neuropathy. Dr. Shaibani agreed that I had Diabetic Neuropathy.
My Neuropathy started about five or six years ago. At first I though I just stood on my feet too long or worked too hard in the yard that day and had leg aches. Well, the pain got worse as time passed and that’s when I went to the doctor the first time about the problem. Tylenol at night didn’t phase the pain. I began having leg pain constantly; all day and all night.
After Dr. Beauvais had diagnosed Neuropathy, she prescribed Neurontin, which did not help but slightly. Dr. Shaibani prescribed medications Ultram and Panalor, which helped a little bit also. I found I was falling asleep at the wheel of my car in the mornings, so we cut back on the medications. Of course, the pain was worse again.
I have had to do less yard work and give up some dancing time. I love to dance, but the pain afterwards is unbearable. I have to wear high heel shoes to work, but try to get the lower heels. By the end of a work day, my legs are really hurting. I don’t feel up to anything when I get home. I just want to sit down and prop my feet up.
I was always very active and this has really slowed me down. I can’t go for long walks, go shopping (which I love to do), or run either. My diabetes was under control until I lost my job and had no insurance and had to do without my medicine. My sugar got really high and, of course, the leg pain was more intense.
I am back on medication and hope that it will get better soon. I did try to participate in a Neuropathy study, but was unable to complete it because the medication made me sick to my stomach so much I couldn’t go to work, so I had to drop out.
My life is definitely affected by this disease because of the pain. Sometimes it hurts so badly it makes me cry, which only makes it worse. I would ever be so happy if they could come up with a medication that actually worked and at least take away some of the pain.
Female – Present Age 72
I am a white female, age 72, a retired school teacher living alone in Florida for the past 16 years. I am a mother of three children have been a widow for almost 30 years.
As a young woman of 32 I began with restless legs at bedtime. Though tired from teaching all day, caring for my three children, parents living with us, and my husband who was quite a bit older than I, I could not fall asleep at night because my legs were twitching.
My family doctor put me on Ativan, a very tiny pill. I didn’t know for years that it was a tranquilizer, but it did help my legs. I believe I took that pill at bedtime for 25 years. I led a very busy and happy active life.
In my general medical history I have suffered from puberty to menopause with dreadful migraine headaches and even cluster headaches. In 1979, at age 50, I suffered my first of three perforated colons. It took a year of my life to be put back together and recover from the trauma to my system. But then I was off and on the go again until 1993.
I retired at age 57 and came to Florida. Gradually my legs worsened. I could not sit through a meeting, opera, concert, theatre, movies, etc. My legs spoiled the whole experience for me and eventually I had to go and stand at the back of the room to finish the concert or movie.
After my second perforated colon in 1993 at age 64, my legs became unbearable. I went to see a Neurologist who prescribed Sinemet 25/100 mg which did provide some relief for awhile. I was now with a colostomy. In 1994 my colon perforated the third time. Another long period of recovery. During this time I had right-sided low back and leg pain. Also a persistent loss sensation along the right lateral thigh and foot.
In 1995 my medical problems included a double laminectomy, colectomy and lilostomy. At the time I was now taking Elavil and Neurontin. From that time forward, on a scale of 1-10, I had constantly a level of 3 or 4 pain upon waking. I could get through the day fairly well, just learning to tolerate the pain.
By late afternoon which we now call the “witching hour,” the pain would always escalate. It never failed and has been going on for about 6 or 7 years. About this time the words Peripheral Neuropathy crept into the doctors’ vocabulary. Also mentioned lumbosacral radiculopathy. Medication continued with Sinemet, Neurontin and Elavil. There was no remarkable help from any of these three. Meantime, numbness continued in both legs up to the ankle and sometimes went up the leg bit.
At this period, I was taking Klonopin .5 mg, B12 injections, Prednisone 10 mg, Ketoprofen, Neurontin 400 mg, Sinemet 50/200 mg. Extra Sinemet was approved. The pain which continued into the night often passed the 10 mark and was closer to 100-1000. I was frantic, crying my heart out for hours. The only good thing was that I knew it would stop when it was good and ready on its own. I was losing so much sleep and having to sleep during the day, crying a good deal of the time and very despondent. At one time I visited a psychologist, but it was of no value.
To describe the pain – it was steady and strong everywhere, sometimes shooting jagged flashes through me. My big toe would have jabs, feeling like swollen footballs. The warmth and circulation was fine. The best word I can describe the pain is gyrating: like the huge mixers in a bread machine, that go round and round.
I had a second bout with rectal bleeding. I was each time put on the dose pack of Prednisone. I still have a Hartman’s pouch.
In regard to my daytime pain, I can have an attack start in the afternoon so bad, that while I am driving home I must pull over and stop, get out of the car and just wait until it calms down. I certainly cannot drive with such pain and so much medication.
I have been to a number of Neurologists. Some said there is nothing that can be done; it is not curable. But I felt there has to be a Neurologist who could help me.
In 1999, I also was diagnosed and had surgery for a lumpectomy in my right breast. It was not malignant but I had seven weeks of radiation. The nightly leg and feet pain continued. It never missed a night, always lasting a few hours, sometime until morning.
In the spring of 1999 I went to Mayo Clinic in Rochester, MN. The doctor gave me Oxycontin to help me through the three week trip. I am sending my complete set of papers at my time at Mayo, but I know that space would not allow them to be included in my story which Dr. Shaibani has in my files.. I was very disappointed at Mayo.
I did return for two more weeks in the summer to Mayo to take their pain management course. I was not the only one there who was disappointed with Mayo. I’ll say no more about Mayo as this story is not to evaluate Mayo. Since no one was treating me at home for Neuropathy and, in fact, Mayo doctors told me I did not have Peripheral Neuropathy.
During the time I was seeking evaluation, I met Dr. Aziz Shaibani, Nerve and Muscle Center of Texas in Houston. Even though I live in Florida, I find great comfort in being under Dr. Shaibani’s care.
Neuropathy & IBM in Australia
Date of Diagnosis: August 1998
Female – Present age is 75
I had been complaining of decreased mobility, difficulty in getting out of chairs, off the floor, climbing steps, pain in leg muscles, some difficulty in swallowing, and sharp pains in my back. My CPK level was done in August 1998 and blood tests showed elevated Troponin T. I was hospitalized for a battery of tests including EMG and muscle biopsy. I was given the diagnosis of Polymyositis (PM).
I learned later I was also diagnosed with Neuropathy, but I was not informed of this at the time. I had been taking Zocor for about nine years since having had a coronary bypass in 1989. Zocor was discontinued. In December 1999 I was diagnosed with bowel cancer and operated on successfully in January 2000. My symptoms were decreasing after the surgery. The pain was lessening and I was getting some of my mobility back. My Cardiologist was like me, not aware of the diagnosis of Neuropathy, and he prescribed Lopid.
After several weeks the symptoms returned and the Lopid was stopped. I have continued to deteriorate since then. I might add that I changed my Rheumatologist prior to the bowel operation and it was the new Rheumatologist who told me about the Neuropathy. He was surprised that neither me nor the other doctor was aware of the Neuropathy.
I have had considerable problems with pain and medication as I am unable to take Codeine. In November 2000 I started on Neurontin 300×4/d, and this has eased the stabbing pains I was getting in my body and the electrical twitching. It has not stopped the burning pain which is constant and severe which reaches from my toes to my buttocks on both sides of my body.
I also take Prednisone and now down to 10 mg/d. I have tried to lower the dose but I find I need 10 mg/d as my maintenance dose. I am not sure which condition causes which pain, nor can any of my doctors. I am not even sure that I have Polymyositis. I am more and more convinced that the diagnosis should be IBM, and that the Neuropathy is from myelin damage. I think they are both autoimmune and somehow mixed up with the cancer.
I have asked my Rheumatologist to look up the slides of the original biopsy. She suggested I might have another biopsy, but that thought doesn’t appeal to me. In Sydney it takes four months to get an appointment with the Rheumatologist.
In August 2000 I was again hospitalized and had another EMG. It was suggested that bed rest was the best treatment. The Neurologist suggested Aspirin, but as I am a bleeder, that suggestion was ignored.
I can get around the home with a cane and have a series of high chairs and stools. I have a scooter and am able to go to the local shopping mall. I do most of my shopping on the Internet. My husband is totally blind and is in a state of denial about my pain. He doesn’t seem to understand that I don’t want to entertain visitors for meals or overnight stays.
Right now, I am very frustrated with my current lifestyle. I was once such an active person. I did a lot of voluntary work and I find being confined to the house very boring. If I did not have my scooter and computer, I think I would go bats. I try to maintain my sense of humor, but it is often to my detriment, especially with some members of the medical profession who feel I do not give them the deference they deserve.
I am presently attending the Pain Clinic at arguably Sydney’s best hospital in hope I will be prescribed duragesic patches. I find it amazing that the question of addiction is raised at my age. I come from a long lived family and the prospect of another 15 years of pain is not appealing.
I find it amazing that one has to beg for pain relief which is not forthcoming. My General Practioner agrees with me. She is unable to prescribe anything stronger than Ultram which is not very successful. People who take Codeine have a much easier time. Unfortunately, Australia does not have pain legislation.
Unlike many of the people who use the Bulletin Boards in the Internet, I do not have belief in an Almighty and get my solace from friends and family on each, which I have many. I envy their faith, but I cannot share it.
Chatswood NSW Australia