Normal mri w progressive symptoms

[curious neuro patient]

I was referred to a neurologist in 2001 after experiencing tremor in both thumbs/hands, sudden onset of blurred vision in one eye, and balance problems.  Neuro exam found gait ataxia, tremor, left hand weakness, and optic neuritis. He ordered mri, veps, and emg to rule out MS or MG.  All tests came back normal. I declined LP.  DX: Essential tremor.

In 2002 routine trip to optometrist revealed a small blind spot in field of vision test.  He sent me back to neurologist.  An ocular MRI came back normal.  

In 2003 I had frequent falling episodes during pregnancy - after pregnancy I began seeing bright flashes of light at the edge of my field of vision, triggered by sound.  Neuro noted loss of sensation on shins in addition to previous symptoms.  No further testing was done, dx of essential tremor remained.

In 2006 went back to neuro again after another round of frequent falls, difficulty walking in extreme heat (100 plus temps), fatigue, cognitive issues and noticeable atrophy of left hand muscles. Neuro ordered cervical spine MRI, again normal. Dx of essential tremor remains.

In the past few months I've now had several episodes of difficulty w/bladder & bowel issues.  My question: my neuro won't dx MS with normal mri.

I know a small percentage of people have ms w/normal mris... but other doctors dismiss this.  I know ET can cause symptoms other than tremor, but atrophy and visual probs are not among them.

I would like a doctor to comment.

[lisa wood]

I have had the visual evoked potentials done once but that was nine years ago. The other 3 neurologists did the MRI's and spinal taps. What is somatasenory? I also cannot do the sobriety test. If I was pulled over a cop would think that I had been drinking because when I try to put one foot in front of the other my leg goes all over the place and I fall. I would like for once for a doctor to experience what we go through for 1 week and then they will understand that this is not in our head. How long have you had this? Also have you ever had the test for Epstein-Barr? I have the chronic type that caused the CFS but I still think that I have something else going on with me. Does anyone have swollen lymph nodes? Thank you all for your feedback.

[patsy10]

Yes, I still have numbness and tingling all over my body from my scalp to my feet.  I have heat, cold and burning sensations in different areas.  My muscles twitch from head to toe.  I have sore and downright painful spots all over my body.  Most of them stay in the same spot but I get new ones and they move around.  My arms and legs are weak and heavy.  I get weird rashes all over my body.  I will say the weakness is better than it was 2 years ago when this hit me for the second time in my life.  I had these same symptoms back in 1993 after a classic bullseye rash, actually I had 3 bullseyes.  Bullseye rashes are consitent with lyme.  I have never had a positive lyme test though.  I have responded to antibiotics both times and had improvement.  It took me 5 years to recover the first time.  It all hit again in 2005 after having surgery.  If the lyme test you had was the ELISA, the test is essentially useless.  You should have a western blot.  I am not saying you have lyme, just letting you know from my own experiences.  I really think you should have a herpes zoster titer drawn as well.  I have had every test known to man for MS.  All have come back negative.

[numbinGA]

Are you still numb?
What were/are your symptoms?

I had a Lyme test done and it was negative.  I did have shingles when I was 8 years old.  

[patsy10]

I clearly do not think you have fibromyalgia or CFS.  Or maybe you do but it's secondary to something bigger. Those are diagnoses they give you when they don't know.  I also don't think you need a psychiatrist.  Your symptoms are real.  I have many of them with all normal tests.  Arrogant doctors can't admit they don't know so they say it's all in your head.  I  think this is especially true at large, well-known health facilities.  I do think your symptoms sound like MS.  It could also be chronic, late-stage lyme disease.  Even if you were tested for it and the results were negative you could still have it.  Other tests for MS are somatosensory and visual evoked potentials.  Have you had these done?  They are supposedly very sensitive to lesions that don't show up on MRI.  I do think you should have full testing again.  I think testing should be every year as long as these symptoms are present.  I'm not a doctor just another victim of an undiagnosed neurolgic problem like you.

[lisa wood]

I have been suffering from neurological problems since 1998. I have had several MRI's, CAT Scans and 3 spinal taps. I have gone to 4 different neurologists and the first thing they say is MS when they take a look at me. They do all of the tests and the tests come back normal. I am told I am a gray case and that I am unique. The doctors seem to think that I have some type of demylanating disease but nothing ever shows up. I have had a vestibular test done and found out that I have vestibular problems. Upon exercise I feel very fatigued and my muscles become very rigid. I have tremors in the left arm and both legs. I have had stroke-like symptoms but MRI is negative. I also get the Bells Palsy and slurred speech in which my tongue deviates to the right side. I cannot do the finger to nose test on my left hand as my hand will start to shake uncontrollably. My symptoms first started out just with my legs and now they are continually getting worse. I have been diagnosed with CFS and Epstein-barr Virus. I also have been diagnosed with Fibromyalgia but after the stroke-like symptoms my condition is too acute for Fibromyalgia. I have had the head neurologist at John Hopkins Hospital say that I needed to see a psychiatrist because he thought that this was all in my head because he did not believe in Fibromyalgia. I am thinking about going back to a Neurologist and going through the tests. I have not been to one since 2004.  I am just afraid that I am going to go through all of the tests again and they will once again come back negative. I usually get an episode every 5-6 months but I am experiencing another episode only after 2 months of being in a wheelchair for 2 weeks. Is anyone else experiencing these same symptoms and was your diagnosis MS?
Thank you,
Lisa

[patsy10]

Im just not buying this diagnosis.  First off, did you have shingles???  A herpes zoster(shingles) titer should have been drawn to see if indeed it is shingles.  I think  you should have had a spinal tap right away. If there is a central nervous system infection in needs to be checked early on in the spinal fluid because it won't show up later.  The spinal fluid should have had multiple tests run on it including an  MS panel, herpes zoster, lyme etc...Lyme is also a possibility.  It causes numbness, bells palsy and it gets WORSE when you take steroids.  I question how competent your neuro is......I would seek a second opinion.  How can diagnose a zoster infection without running and titer?  I would get a second opinion.  I have gone almost exactly what you have except for the bells palsy and the high BP.  Two years later I still have no diagnosis.