What now?

[Anook]

I bring you yet another "is this MS?" case. 35 y.o female: PhD, former marathon runner & ski racer. Sx since 2005. Began with tingling feet while running. Sudden onset of blurry vision & weak legs (could not walk, too wobbly). Shortly after, my right side became weak and I had difficulty with muscle control. Since then, bladder and bowel incontinence (no childbirth), pain and weakness in limbs, twitching muscles, and aggravating neuropathies have continued with no clear abatement. Heat-intolerant - have not taken a hot shower or bath or been in direct sunshine for 4 years. Lately I have been feeling weaker in the legs. Sx are much better than the first 6 months, but my life has changed drastically - I work part-time as I find little physical efforts fatigue my legs and arms. Although I've been determined I can't seem to get back a fraction of the strength and stamina I once had. Walking for 10 minutes is huge effort.
Normal ('05-'08): MRI's of brain and entire spine on T3 machine, LP's.  Abnormal ('05): SSEP, VEP (conducted twice), and urinary flow ("low conduction" was noted). I have an absent abdominal reflex, but otherwise normal clinical exam. MS mimicks ruled out.
I have been told I have a psychiatric problem, MS, TM (but that would not explain the abnormal VEP), & post-viral syndrome. I think after getting to know me, the psychiatric diagnosis is quickly discarded.
The questions I pose have not been clearly answered for me thus far:
1.Does 4 years of normal mri's rule out MS? When is one "out of the woods" with clear MRI's? 5 years, 10 years?
2.There is some disagreement as to the efficacy of the evoked potential testing - and my neuro blew off the results.  
   But would two abnormalities in two different places (tests repeated) indicate a problem?
3. Where do I go from here? Continue follow-ups with local neuro? See a specialist?

Thank you so much for your time.
Kristen

[Quixotic1]

You do present a conundrum.  My thoughts are the same as before.

I think you should investigate NMO - Neuromyelitis Optica.  I invite you again to come over to the MS Patient Forum.  Our specialty is helping people without a diagnosis zoom in on things to look at.  A couple of our members now are being investigated for NMO.  If I remember right, the LP is typically normal in NMO.  60% of our members are undiagnosed.  Little by little they find their answers, which are not always MS.

Again, one previous normal test for Lyme notwithstanding, I think this is a good possiblity for you.  You might want to visit the Lyme Forum here and speak to Wonko or Speechgeek, SOONERMOM, or Amyloo.

Post-viral syndrome - sort of a waste basket diagnosis, but we know that viruses can leave people with systemic and neurologic symptoms that resolve slowly or not at all.  It is a nebulous diagnosis at least.

If people with disabling symptoms are nuts then they need to come over to the MS Forum and join our Greek House - Hypo Gamma Chondria.  I'm not a big believer in hysteria as a cause for this kind of neurologic disability.

Neuro damage of almost any kind can have heat intolerance, for example stroke.  But, talking to others, they are not as exquisitely sensitive to small changes in heat as the MSers.  I am best at 66 degrees in my house, okay up to 70, but can't walk around with it that warm.  At 71 degrees I start becoming weak and irritable and might as well be put out of my misery by 74 degrees.

I found it interesting that it's your legs that act up so much in the heat.  Again, someone should thing about NMO.

I think you should seek another opinion elsewhere, but not at the Mayo.  Something your neuro could do is send the NMO-related antibody test.  Remember that it is positive in 70% of people with this disorder.

I have to leave and won't be returning to this forum.  Just don't have the energy to keep up with both forums.  Thank you for your kind words.

Quix

[Anook]

Thank you for your thoughtful response.

I have seen a number of neuros since '05 - I live in Montana so I am not receiving the best cutting edge care here. But I have made annual visits to see one excellent MS specialist from Boston. He says "post-viral" - another waste basket diagnosis?

My last abnormal SSEP was in 2006. I am totally opposed to submitting myself to this test (or the VEP) for the third time, as even the "abnormal" result is not compelling enough in the eyes of the neurologists. My LP was completely normal twice (in '05 and again in '07) - no elevated proteins, no o-bands. They elimated Lyme with a western blot test and the LP. Peripheral neuropathies have been ruled out with EEG and nerve conduction studies. My rheumo blood panels have been normal. The ONLY abnormality is the VEP and SSEP, and "slow conduction" with bladder through urodynamics testing. I have had a couple of thorough neuro tests, and find it amazing that no abnormalities are found. I continue to have vision problems; shaky, weak, fatigued muscles; loss of muscle control, tingling in heat. The heat intolerance is awful - my legs can be wrecked for a week if I am not careful and go out in the sun for too long.

What the heck is going on? I am an educated, reasonable woman. I know that it is highly unlikely that I do not have MS. Are all of us with normal mri's but with symptoms nuts? Does anyone track what happens to those of us with symptoms but no diagnosis? Is there some new illness out there that is rearing its ugly head and they don't have a name for it? What else causes heat exposure induced tingling and weakness? (no one has been able to answer me this with a remotely good explanation).

Some days I just try and accept what has happened to me....and other days, I just really want to know what has ripped my life apart.

Quix - I see that your insight and support helps so many. Thank you. And if you have any thoughts about the above questions, please do share.

[Quixotic1]

Hi, Dr. K is not around, but the search is ongoing.  I know that he has, in the past, stated that repeated T3 MRIs are essentially proof positive that MS can be excluded from the diagnosis.  

Combined with the normal neuro exam and the normal LPs, MS is VERY unlikely, but clearly something is happening to you.  The Evoked Potentials document slowed nerve conduction velocities within the CNS as would occur with demyelination.  I am impressed that these tests (the VEP and the SSEP) were repeatedly abnormal in different labs.  I am far more aware of false negative EPs than false positives.  Have the EPs been repeated since 2005?  Have they done OCT? (though OCT has not yet been shown to be of value in the diagnosis)

Have you had EMGs and NCS?  Have peripheral neuropathies been ruled out?

Were there ANY abnormalities in the CSF?  Like just a high protein?  (considering here something like CIDP)

With the consideration of Transverse Myelitis and the abnormal VEP was there consideration of NMO - Neuromyelitis Optica (an MS mimic that where demyelination is limited to the spine and the optic nerve)?  There is a blood test for this called NMO-related Antibody that is positive in about 70% of cases and is a definitive test.

Do you feel that you have really had thorough neuro exams?  A really complete one takes quite a while to do.  Your tendon reflexes are really normal?  With the level of your disability, it is hard to accept that your exam would not show something in the hands of a competent neuro.

In my never so humble opinion, I am not convinced that even the T3 machines show the whole story 100% of the time.  I think the cases that the T3 miss are likely few and far between, but I am convinced as a scientist that they occur.  My "evidence" is based on the objective studies that show the 7T machines are still picking up lesions that the T3 missed.  It is also based on the very anecdotal evidence of things like the fact that my Trigeminal Neuralgia did not show a corresponding brainstem lesion - and 100s of similar examples with others.

Have you seen the same neuro for this whole time?  With ongoing and increasing disability, I would have a hard time accepting no diagnosis at all.  Myself, I would seek another opinion from an MS specialist.  My experience from the MS forum, though,, is that it no one will get an MS diagnosis with a normal 3T MRI and a normal neuro exam.  I have definitely seen it happen with a normal MRI and very suggestive history and exam.

Also, it is common to believe that the mimics have truly all been excluded, but this frequently is not the case.  It might behoove your docs to repeat this testing and also make sure that Lyme Disease has been excluded with a Western Blot sent to two good labs, with reporting of the specific Bands found.  Lyme Disease with CNS invasion is one of the mimics which could give the entire picture you have presented.

I have to add the disclaimer that, although I am a physician, I was not a neurologist.  I do have MS and read everything I can get my hands on.  I invite you to the MS Patient Forum where we have a good number of PhD and other scientists.  

http://www.medhelp.org/forums/Multiple-Sclerosis/show/41?camp=msc

I hope this has helped.

Quix, MD