by Flora Brand
I believe my PLS started in 1991. I had problems with wheezing in March so I went to my primary care doctor Dr. Edinger. My voice began to get hoarse with shortness of breath. I had a round with the flu and thought that was the cause of the hoarseness. Dr. Edinger game me a breathing treatment (nebulizer) and prescribed Prednisone. During the first couple of days I developed a small node on the sumaxillary gland on the left side of jaw. The node was hard to the touch but not sore. Dr. Edinger said that it was a reaction to the Prednisone. He referred me an ENT doctor.
ENT – Dr. Gall performed a larynogoscopy and nothing was found.
Jan. to April 1992
Dr. Linda Stark noticed my reflexes were a bit sharp and blood work indicated that I had anemia. She prescribed iron tablets. I still had the hoarseness. Dr. Stark thought that maybe stomach acids were causing it and told me to take antacids. I also developed tingling on my right side of my face. She could not say why I had tingling.
Still frustrated with my voice, I went to my father-in-law’s vascular doctor, Dr. Tiegman. He sent me for thyroid images tests. Had Echograph Thyroid uptake-test and it showed cysts on the right side. Dr. Tiegman wanted to wait three months to see if the cysts would be changed. After three months, there was no change. He then sent me to another ENT doctor, Dr. Michael Diamond.
Dr. Diamond performed fiberoptic-widely fluctuating vocal quality with aphonia. I indicated that I had asthma for three years and had been given presidsone and had gone through allergy injections. He also indicated that I had extraordinary gag reflex. He was not able to do the nasopharynoscope. I was given a prescription for Valium and told to come back in a week for a retest. One week later he was able to do the nasopharynoscope. It showed there might be a viral neurtis of the laryngeal nerve on the right side of, and early sign of arthritis of the thyroarytenoid joint or maybe some more sinister disease. The left side was normal. I had an MRI brain scan at Bayfront Hospital Novermber, 1992. The scan was normal. Dr. Diamond referred me to a neurologist at Suncoast Medcial Center, Dr. Scott.
I saw Dr. Scott (neurologist). He performed routine tests on me and had me walk on toes, heels bend down, etc. He could not find anything wrong.
My voice was continuing to get worse. Finally went to Tampa at USF Medical Center to Dr. Ridley, ENT. He examined the MRI and indicated that I had Spasmodic Dystonia and recommended Botox Injections into the vocal cords. I had vocal test done…a vocal recording. In December, 1993, I received my first botox injection. The results were wonderful and I was able to talk without any stress. This shot last until November, 1994.
Dr. Holiday in Tampa, ENT. Dr. Holiday gave me my second botox injection. He was able to do only one side after eight tries. I could not go on. There was some success but did not last long.
In May, 1995, I slipped and fell on our ceramic floor. The fall broke my left wrist in two places. I went to Dr. Davidson. He set my wrist (in a temporary sling) to see if it would heal and then went on vacation, leaving another doctor to put the plaster cast on. The cast was put on, but after a few days, my hand was put into a uncomfortable position. I went back to the doctor’s office and an assistant removed the cast and opened my palm a little more and put on another plastic cast. Dr. Davidson came back from vacation and the wrist was x-rayed to see if it was healing. The bone had shifted so he had to reset the bone and a new cast was put on. He was a little upset because he said he didn’t set the wrist in this position. He was informed that the original cast was replaced.
During these visits, I began to notice that my right leg would stiffen up during pain and stress but would disappear after I calmed down. I didn’t think too much about it and just thought it was all stress induced. After several weeks, the cast was removed. During physical therapy for the wrist, the leg was getting worse and also my balance was affected. I decided to see a neurologist. October, 1995
Dr. Greenwood gave me an EMG. He indicated that I should see someone who was more knowledgeable in muscle disorders. Finally in January, 1996, I found Dr. Michael Franklin.
Dr. Franklin performed an EMG on all limbs, back, face and tongues. I went to have blood work done to eliminate any rare diseases or deficiencies. All were negative. A deep muscle biopsy was done at St. Pete Clinic and results were negative. An MRS was done and an MRI of brain. A spinal tap.
The recovery from the spinal tap was terrible. For four days, I remained in bed with nausea and migraine headaches that I had never experienced. I should have been given a blood patch. Blood work. MRI of the spine. Heart tests, echocardiograph, doppler, echo, doppler color, flow vel map, B-12.
The MRI’s showed a hot spot on the brain and I was referred to Dr. Busnell Clarke (brain surgeon). After several months and several other MRI’s he indicated that the hot spot had not grown and he and Dr. Franklin thought it could be one spot of MS placate or a group of blood vessels. I had to go back and have another MRI in six months and then one year.
December 6, 1996 – PLS Diagnosis
I got a second opinion by Dr. Weiss. They both agreed that it was not ALS but PLS because after one year my condition had not changed drastically.
I saw a pulmonary doctor, Dr. Thacker. He had several tests done PFT Bronchospasm Evaluation. My lungs showed that they were not working at full capacity but that is because of PLS. MRI of the brain. Started physical therapy for balance control. Multiple Sclerosis evaluation with Dr. Dunn. Threw my back out and went to emergency room. Hearing test. MRI of brain.
Dr. Franklin and Dr. Coundortios give me my third botox injection. Given a small does because of no records of previous shots.
Given 4th shot at a larger dosage
MRI to update hot spot…no change reported.
April 30, 1999
My present condition has basically stayed the same. I use a four-wheel walker with hand brakes and the electric scooter for all day events. I get fatigued if I over do housework or all day outings. I have extreme startle reflex and brisk reflexes. I drag my right foot and my ankles turn inward making my feet hurt at the end of the day. Stiffness in the early morning upon waking up, but as soon as I start moving, I will loosen up. Not much muscle cramping or fasciculation. Have urine urgency and inappropriate laughing and crying. I am told by Dr. Franklin that I had a great deal of strength which is unusual for PLS. I am unable to catch myself if I begin to fall, but able to get down on the ground and with the help of a chair or walker, I can get up with little problem.
Saturday, September 8th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
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