Living with Neurologic Issues

This may be insanely drawn out, but I know no other way to tell my story.

In early 1995 I waved my left hand at a friend at the end of a long office hallway — and, I had a passing thought my fingers did not move or do that female fingers waving thing; but hurrying on to my work destination I shrugged it off.

A few months later I was, having pain in my wrists especially the left, and I made a doctor’s appointment, where a PA quickly gave me cortisone shots for carpal tunnel without a diagnosis, and I experienced intense pain in the center palm of my left hand, whereas the right hand seemed to hurt from the point of injection at the underside wrist to the palm to the tips of my fingers and fiery up to the elbow. I remarked about the difference in feeling and the PA shrugged and remarked, “It’s a painful injection.” I’ve been a secretary for about 40 years, so perhaps this carpal tunnel syndrome.

I noticed on occasion that my left hand would “slip thru the handle” on the grocery or shopping buggy, or the parallel bar on glass entry doors. At the time I shrugged it off as my hurrying here and there. Then one day I was talking with my hands and I noted both hands weren’t moving the same – while the right wiggled the fingers, the left was slow in the animation.

I consulted my family MD. She suggested I see a Neurologist. I consulted a D.O. who laughed at me and dismissed me saying I would waste my time having an EMG, but schedule one anyway. The next day his office called to say Doctor was going out on sick leave for an undetermined time. For whatever reasons, I did not reschedule.

In June 1995 I was on a canoe trip on the Kaw River and became ill. Though we hadn’t been on the water long I felt I was having heat exhaustion symptoms. I became overheated, nauseous and had to bank the canoe on a sand bar and stand in the water to cool off and find refuge due to excessive diarrhea. Because my car was still an hour away by water I had to continue on, drinking as much water as I could, as well as Gatorade.

Nearing the boat ramp my hands cramped and the left actually folded back parallel with my arm. I drove quickly to my relative’s home where she provided a glass of RelivR and within 10 minutes I felt better, my cramps were gone. I assumed I had some type of heat exhaustion, even though reviewing the time frame I think I was not feeling well after eating a breakfast sandwich on my 5 hour drive early that morning to Kansas. I just refused to feel sick and excused the feelings of being tired.

I decided the incident meant I needed to get serious about diet and exercise, being 80 lbs. overweight, so I enrolled in a weight loss program at a local hospital, where successfully I began losing weight feeling terrific and getting more exercise. However, in class once a week I always ran up the stairs and whereas everyone was giddy with their newfound energy mine was regressing. I started having pain in my left shoulder whenever I lay down, and eventually I could barely walk up the stairs at work or the hospital.

During this discovery, I realized I needed to again retrace my steps and see a Neurologist and my MD first ordered a blood test for Thyroid, a test I balked at because my thyroid was always normal and not an excuse I could use for being overweight.

The result was an unusually high result for hyperthyroidism, Graves disease. Treatment with an Endocrinologist for 1 year cured this problem. However, during this time I developed a spot on the left side thyroid that grew rapidly and after needle biopsy was declared negative for cancer. A year later I developed another spot on the right side and had another Uptake because the spot was located above the Jugular and not safe for needle biopsy. This too was negative for cancer. But I digress and this may have nothing to do with Parsonage Turner Syndrome.

The family doctor also ordered a C-Spine MRI and recommended a Neurosurgeon, who in turn sent me to a Neurologist who said I had M.S., based on what I called “the finger spasticity test” and ordered a Brain MRI and a Spinal Tap. Everything was “plum normal” according to the Neurologist; but, he still insisted I had M.S., even though most diagnosis did not go over the average age of 50 (I was soon to be 58).

No one else agreed with him and I had a second consult, where I was told emphatically it was not MS; he wasn’t sure what the problem was, but it was not MS and all tests concurred. He would tell the Neurologist of his conclusion. I was told by the original Neurologist he still wanted me to take shot treatments regardless of anyone else’s opinion. I thought and reviewed and researched and made the decision not to take drugs that I felt were clearly not needed.

I continued to have pain in my left shoulder, when lying in bed at night, to the point that my best description is that it was like someone was cutting my arm off at the joint or that it was broken. Everyone ignored this point whereas I felt they thought I was making it up or being hyperchrondriac [hypochondriac].

In January 2006 I noted that my typing was becoming a nightmare in that I was making typos consistently until I noted it was the QWERTY side of the keyboard, so I requested and received a new keyboard. It wasn’t the keyboard, but weak fingers. Following this, for a week my left hand started swelling and turning shiny bright red on the top and purple on the palm side, without pain so I just took a couple Tylenol and kept it elevated. I started looking for a new doctor.

A couple weeks later sitting at the computer, I experienced a severe sharp pain down the back of my neck, across the back of my left shoulder and down the left arm. Leaving out the theatrics of thinking I should have looked up the signs for women’s heart attacks, and not wanting to call attention to myself because of being in a new job for about 2 weeks, or go to the emergency room, I opened my insurance book lying handily on my side desk, and called an Orthopedist, the third call I placed accepted new patients and saw me the following morning. I took my films from the months before.

Dr. “W” performed the initial exam asked for my full story then said, “At first I thought you might have frozen shoulder, but I think we should do a few tests, including a NCV and EMG.” After all exams I was diagnosed with Parsonage Turner Syndrome, a rare form of brachial neuritis affecting men and women approximately 4-2 , mostly affecting the left side, and my diagnosis turned into affecting my right hand which apparently is more rare than the 1 in 100,000.

Once again I stood in the wrong lottery line. Pain and swelling relief was prescribed for 1,000mg Aleve or 2,000mg of Tylenol. Today I take 440 of Aleve. If I do not take this, the swelling still occurs in my hand, and that original pain in my shoulder is still there. About once a month, on a weekend, I try to reduce the amount of Aleve or not take it at all but for one day it is just an irritation, but day 2 it raises the pain level and my hand swells more.

At Barnes Jewish Hospital/Washington University Medical School, they were beginning to see 1-2 patients a year, after a ten year regression of this disease. I guess and hope I was their first and only one for 2006, since it was just January. I understood that most cases would heal itself within 24 months, the majority at 100%, and the least at 75%.

It is unknown what the cause is as no patient presents the same. In my case the hand being affected is rarer, without many cases on record. It is possible that mine is an immune system cause.

It has been 26 months since diagnosis and while the nerves seem to have healed, the hand is not working. Further NCV and EMG studies show another level of nerves are not working correctly; MRIs of brain and C-Spine are negative. Physical therapy seems to help some of the stiffness, Electric stimulation will move the hand and fingers for me, and on some nerves it actually opens the fingers and lets then be straight for a time, and this feels great. The insurance company considers the EMPTI machine as exploratory and will not pay for further use of a machine at home, so the hand therapist is rebutting their denial, I’ve got my fingers crossed – well my right hand fingers.

I was referred to a surgeon, leading the forefront of nerve re-construction, for review and she ordered complete and further NCV and EMG testing, and that exam has me waiting on an appointment with a Neurologist for review of my history and possible examinations for MS and ALS

The past few weeks I have been able to raise my left arm, perhaps not perfectly perpendicular but it is raised up without aid of my right arm.

The Team of doctors I have worked with is on an International Committee for this disease. I have blessed by 6 interested doctors for the price of one. I hope they forgive some of my attempts of teasing and humor in the Examination rooms. My original symptoms mirrored the history of presentation and timelines of all documented research; I know there has not been a wrong diagnosis of Parsonage Turner Syndrome and now I want to find anyone else that may duplicate what I went through, and I am now facing. Thank you for your patience in my lengthy story.