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My Journey to Diagnosis

Mar 28, 2008 - 40 comments

I am a 56 year old female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever suffered.  I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!

Three years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put my sock on. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.

I knew this neurologist thought I was a crock.  But, he was also supposedly brilliant and had been named one of Portland's "Top 100 Doctors.  So, even though he didn't seem to like me, I expected him to be knowledgeable and professional.  He examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. At the next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it "definitely wasn't MS and that I was too old for it anyway."  fI asked what could have caused the sudden weakness and spasticity and he said maybe I had a stroke.  But, he didn't think working me up for things that cause strokes was necessary.  He sent me home with the diagnosis of "Vertigo and Spasticity- mild."  I didn't know much about Adult Neurology and was too fatigued to check out what he had told me.  Why would he lie about it?   Later I discovered in his notes that he thought I was faking the weakness in my right leg (faking spasticity??)

During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (Losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, I became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks.  One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs.  I collapsed in the street crying and a neighbor helped me home.  The fatigue and weakness in my right leg continued and became progressively worse.  A few months later I had a couple weeks of a weird sensation of warm water running down my right thigh. I kept grabbing myself and checking, because I was sure that I was being incontinent.

I went back to the neuro a year after he had seen me before. Because of the history of incontinence he repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of the spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right... So I told him that "he" was the neurologist and what did he recommend?  He said he didn't think the LP would reveal anything.  So I told him I didn't see any reason to do it.

The next summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months.  Even so I was left with residual weakness at the shoulder.  Meanwhile I'm still dragging my right leg, because it never got better and lurching about like a drunk sailor.  I was so tired that I stopped leaving the house.  My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.

It was several months before I could get my mental strength and courage to research my own problems. I never wanted to see another doctor in my life.  My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was Multiple Sclerosis  . All the other possible entities had been ruled out (this is critical in the daignosis of MS)  The problem was that my MRI was "normal" (or so I had been told) and I was too old at 54. You can suspect MS, but it appeared that you cannot diagnose it without at least 1 brain or spine lesion on MRI.

I went to the MS Society website and looked for MS specialists in my area.  My first neuro was on their list.  I called them and found that doctors "volunteer" that they are specialists.  There is no selection process.   I found another Neuologist, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He said that there is no upper age limit for diagnosing MS.  He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine.
He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications.

Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine. They were just a little "ratty" looking, not really hyperintensities, but tiny areas that looked different.

The tap was positive for an elevated Protein, elevated IgG index, and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!

Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough.  They improve every year or two. His concern was than in just 2 years, I was already very disabled. I'd had intensive physical therapy and still required a brace on my R leg and I needed to use a cane.  He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.

A month after he diagnosed me, I developed constant electric shocks down my left leg when I flexed my neck.  Dozens of times a day.  It's called L'Hermitte's Sign, and it is common in MS, but was new to me.  It is felt to indicate upper spine lesion that presses on normal nerves when the neck is flexed.  He ordered another MRI of my spine but specified that it be done on the new 3T machine in a private imaging center nearby.  That MRI showed 6 lesions that had been invisible on the earlier 1.5T machine.  Four of those lesions coincided with the areas he had been suspicious off in the earlier MRI.  This clinched my diagnosis.

In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.

An arrogant and dismissive neurologist had misread my MRI, erroneously told me I was too old to have MS, indicated that he thought I was malingering or faking my problems and failed to do the proper work up for someone with weakness and spasticity.  His treatment of me was humiliating and further destroyed my almost non-existent self-esteem.  I set out to help people who have been put into this position.  If I can convince even one person to take control of their own destiny and move beyond those soul-sucking doctors who blame unexplained neuro symptoms back onto the patient.  I knew I wasn't crazy, but I almost let an arrogant bast**d convince me otherwise.

That is why I am here and do the things I do.

Quix