My Journey My Challenge – Multiple Sclerosis Journal VIII



By Jewel Tyler

My girlfriend who made the trip from California to be by my side came to the hospital everyday to visit during her time in Dallas.  It was probably a welcoming break for my son, who had been simply wonderful throughout this entire ordeal.  He is my youngest son and I know it was such a huge sacrifice for him to leave Virginia; first, come to Dallas and secondly to a mom that was very ill.  However, he never failed me and took exceptional care of me.

I was awakened early every morning to see first if I required assistance with getting dressed, (yes I did) and secondly to be informed what my routine was going to be for that day.  Physical therapy, and then I would return to my room for lunch and then it was time for all of my other therapist to pay me a visit and work with me.  I received many visitors from work as well, which was difficult for me when they visited because I did not want them to see me in this state.  I just let go and let God, I could not do anything about my condition or my state at this point.

I believe the most difficult part of it all was trying to wrap my brain around the fact I had been diagnosed with Multiple Sclerosis and when I would attempt to get out of bed, I really could not walk without using first a wheelchair, and then later graduating to a walker.  My left arm/hand was useless to me and so very numb and tingling as well as my left leg.  It did not help the pacemaker had been installed on my left side so the pain from the surgery hindered my progress with my left art in therapy because I was not suppose to really use the left arm until the area had completely healed from the surgery.

One afternoon, I was lying in bed watching television and my left leg felt initially as the pain one feels when they have a toothache (the best way I can describe it) shooting from my thigh down to my foot.  The pain continued to shoot down my leg, and then my leg became so sensitive I could not even take the sheet on my leg.  I began to scream out in pain, I had never experienced anything like this in my life.  Right at the point where the pain escalated my girlfriend arrived to visit me for the day; I had already pushed my alert button for the nurse to come.  Everyone entered the room at the same time, I was trying to explain to the nurse as well as my girlfriend what I was experiencing, tears streaming, I had removed the sheet from my legs and the female nurse covered me with the sheet when the male tech arrived to check my vitals.  Boy did I scream when that sheet hit my left leg.  Without any further words, my girlfriend knew exactly what NOT to do.  She removed the sheet from my body and raised her voice “It is quite obvious the sheet on her leg is causing her excruciating pain so leave it off; if this guy has never seen a woman’s leg I’m sorry but don’t put that sheet back on her!”  Oh, I cried every time someone touched my leg or foot.  The doctor finally arrived, checked me, and ordered painkillers, which were more powerful than the Vicodin I had been receiving.  His conclusion, “It’s just one of the symptoms of MS.”

After the meds finally kicked in there was relief but there was a pounding fact in my thoughts “One of the symptoms of MS.”  How many more are there I asked myself repeatedly and once again the tears.  I guess you are wondering why I was crying when the pain had been take care of?  Reality, they were reality tears, I have been a person who has taken pride in the fact I did not have any sort of major illnesses, (i.e., diabetes, high blood pressure, cancer, high cholesterol etc..  Multiple Sclerosis had invaded my body, the only thing I had to really deal with over the years was migraine headaches.  Coming to grips with the fact medicine had been ordered for me, which required injecting me with a needle every day for the MS.  It was all too much, hence the tears.  I did not want to talk about it; I did not want to proclaim this disease over or in my body was real.  I believe my girlfriend read my mind and she prayed for me.

Later that afternoon, two new doctors visited me, one was a psychologist and the other was a neurologist.  The psychologist came to help me cope mentally with the acceptance of my diagnosis.  The neurologist came to discuss the disease and assist me with finding a new neurologist, if you remember I had fired Dr. Gupta before leaving the original hospital.  I had however, prescheduled an appointment with UT Southwestern (a co-worker who had MS had recommended this clinic which worked specifically with MS patients) they had contacted me while I was in the hospital to inform me they had a cancellation and would I be interested in taking the appointment.  I agreed to the appointment and received clearance from the Rehab Hospital and informed my son because he would have to transport me from the hospital to the clinic.

Now here we go again, I arrive provide the doctor with my MRI/CAT Scans and she has students in the room with her (interns I believe).  She reviews and discusses with the students her findings.  She finally turns to me and says “You do not have Multiple Sclerosis.” “ I am like oh I don’t well okay then what is wrong with me then?  I have had one doctor tell me I do have it and another doctor that told me I do not have it and now you say I don’t have it.  Who is right?”  She replied, “Based on the lesions I see here they are not large enough to be MS.”  I asked if she could explain the lesions on my brain; she stated they could be from my migraines.  She turned to her students, continued her discussion in medical terminology that was above my knowledge base and then thanked me for coming and excused herself and left the room.

My son and I just stared at each other like with that look of “what the heck was that all about?”  We left and I returned to the rehab hospital.  I finally explained to my therapy doctor and later to the neurologist what the UT Southwestern’s doctor’s diagnosis was; and they were baffled.  I remained in the rehab hospital for one month and when I was finally discharged, I was provided with another neurologist to see; which I thought was interesting because she was African American and they felt she could relate to my condition better than the other doctors I had seen over the past two years.

After being discharged I had to continue with therapy for the next three months.  After hearing the UT Southwestern doctors diagnosis, I continued with the thought I did not have MS and no one really knew what was going on with my body.

After being home for approximately two days, my mother contacted me to let me know she was on her way to Texas from Virginia with my stepfather, they were going to drive down.  Finally, something that would put a smile on my face.


(to be continued)