Real
Life Stories about Myositis & Neuropathy
Inclusion
Body Myositis & IVIg Treatment
Date
of Diagnoses: April 2000
Male
- Present Age 54
I
have Inclusion Body Myositis (IBM) and was diagnosed approximately April
2000. I had the usual muscle biopsy and all the other tests that are
required to make an accurate diagnosis. I am 54 years old now.
I
have been a small businessman since 1977. At that time I was a one-man
operation and slowly grew into a small 7-employee company.
My oldest son came to work with me about 1982 and took over the
service operation of the company; I did outside sales and general manager
work. They say that stress may
trigger IBM but that is a guess at best.
In
1980 my wife and I bought our first home in Houston and that was a happy
event to say the least. About
two weeks after we moved into our home we learned my wife had terminal liver
disease which was fatal within five years.
If stress could induce IBM then that is the period it happened.
It
was not until 1999 that I started to think things were changing in me. I
remember one day on the job that I had to walk up two flights of stairs.
When I reached the top, my legs were on fire to the point I lost
feeling in them. I sat down for a short time and all was ok again.
Then one morning I was blow-drying my hair when I could not finish. I
could not lift my arms over my head much less keep them there drying my
hair. I knew at that point I had a serious problem of some kind.
I
made an appointment with my doctor that week and told him what had happened.
I told him that something was wrong inside. He agreed.
After an hour and half and dozens of tests later, I returned home. I
returned the next week, telling him that things were no better.
After another set of testing, he thought the problem was
neuromuscular. He helped to get
me in to see Dr. Aziz Shaibani at the Nerve & Muscle Center of Texas.
I
was surprised that Dr. Shaibani did many of the same tests that had been
done previously. Dr. Shaibani told me that we still needed to do more
testing the following week. He
told me I could have one of two diseases and needed to do a muscle biopsy to
determine for sure which one was the problem.
I
planned to take an hour from work so he could do the biopsy in his office.
As he was cutting into my leg to get muscle tissues for pathology
studying, he informed me that I would be in bed for a week and would need
some pain medication. The
following week, he told my wife, two sons and my daughter-in-law and me that
I had Inclusion Body Myositis (IBM).
Dr.
Aziz Shaibani started me on IVIg a week after the biopsy diagnosis.
I called my health insurance company - Blue Cross-Blue Shield - and
they gave a six month treatment of IVIg.
Receiving the news from the insurance company and I thought
everything was all right.
At
that time, I did not know about the problems associated with IBM or IVIg. I had no idea of the cost and no one had told me of the costs
involved in the treatment. Well,
after five treatments one week and two treatments a month, the insurance
company turned down all claims saying it was not medically necessary.
I guess they think I can keep falling down.
I
was told by Dr. Shaibani I was the first patient he’s found with IBM
before the disease had destroyed the muscles and was in hopes to slow it or
stop IBM so I could live with it without losing
my job; that I might
be able to stay out of a wheel chair for several years to come.
I
still have strength in my legs, able to walk and should continue for
sometime. The disease is slowly doing its thing, but I am happy I am
doing as well as I am.
Houston,
TX
Inclusion
Body Myositis & IVIg #2 Story
Diagnosed
1999
Female
- Present Age 69
I
am a while female, age 69 years of age.
I was diagnosed with IBM in 1999.
About
the middle of the ‘90s, I began to notice a weakness in my thighs.
I began having trouble getting up out of chairs.
I had to use my arms to push myself up, then I began to fall, would
just be walking and suddenly I was on the floor or the ground.
I fell more inside the home.
I
learned to compensate, like taking smaller steps, watch for drop of foot or
uneven, low places, not to climb stairs without rails to hold onto, wearing
walking shoes.
I
searched several years for a doctor that could help me.
I saw six or more doctors who had no idea what was causing the
problems I had.
Finally,
I talked my family doctor into doing a MRI on my spine to see if that was my
problem. The doctor seemed to
think I had a bad disc, so I saw a surgeon, had CAT scan dye test and the
works, but my back was not the problem.
The
surgeon sent me to see Dr. Aziz Shaibani at the Houston Neuro Clinic, 6624
Fannin Street, Suite 1670, Houston, TX 77230.
He
did a biopsy in December 1999 and found I had Inclusion Body Myositis (IBM). I began immune globin injections (IVIg) February 29, 2000.
I
know it has helped me because I am now much stronger.
I have not fallen in two months, get up from chairs with less
problems, walk up stairs. I now
can walk 3-4 miles five days each week and ride my bicycle.
I
have no pain, do not walk using a walker or cane. I am so blessed.
I
am a nurse and I still work part time as a substitute at our schools and
also sub for the nurses at an allergy clinic.
We
made a 1,500 mile May 2, 2000 and I drove every mile.
Richwood,
TX
Reprinted from “Coping with a Myositis Disease” book, with
permission by the Kilpatrick Publishing Co
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 300x4/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.