Real
Life Stories about Neuropathy
Painful
Feet and Abnormal Proteins in Blood
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.
Pasadena,
TX
Peripheral
Neuropathy
Date of Diagnosis:
July 2000
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.
Houston,
TX
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.
Seabrook,
TX
Numbness
to Bilateral Upper & Lower Extremities
Date
of Diagnosis: October, 1999
Male
CASE
SUMMARY
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.
Houston,
TX
Diabetic
Neuropathy
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.
Humble,
TX
Peripheral
Neuropathy
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.
Sarasota, FL