mellen center appt results

[monotreme]

Hello.  Today (Thursday) I had my first appt with the Mellen center.  I saw a Dr. S (don't want to put the name on the internet).  She was nice, took her time with my history, read through my timeline with me etc.  When she had me go out in the hall and walk, I had my usual weakness, unable to walk on heels or toes, unable to put one foot in front of the other in a straight line, and when she asked me to stand with my two feet together and close my eyes I fell because I lost my balance completely with my eyes closed.  Can anyone tell me what that test is called and what does it mean when you fall during it??

Anyway, she then looked at my brain MRI, and said that she did not think there was enough white spots to call it MS, didn't think there was enough brain atrophy to be called MS, and did not address the note about demyelination process.  She also said that the white matter disease is probably from my five year history of high blood pressure, even though it was controlled with meds.  So then she said that there was pronounced weakness on my left side, but thinks it may be a small fiber neuropathy.  She recommended Neurontin (an anti-convulsant drug) to help get rid of the feeling that there is a stone in my shoe when I walk, and suggested I see a neuromuscular neurologist at Cleveland Clinic.  She said I do not "look" like I have MS.  She also then said that sometimes neurologists never find out why people have nerve damage from neuropathies.  She also implied that the damage to my legs may be irreversible.  I cannot walk more than a block, so I asked her if I would never recover and she did not answer.
My one question is do you think it was medically correct of her to just dismiss MS because of how I look?  She never addressed why I would have afternoon fatigue and memory loss.  Said she would recommend Provigill to my internist and see if he thought I could take it with high blood pressure.  I could go back to the California neurologist who questioned my brain mri as being normal even though the report said abnormal..   The California neuro ordered a sacral MRI to rule out any nerve compression and said if it came back normal, which it did last week, then he would do evoked  potentials and lumbar puncture.  Do you think it would be worth it to have those tests done?

The Cleveland Clinic neuro-muscular neurologist who Dr. Stone said I need to see next isn't available till mid October.  Should I just go back to the California neuro?  Any opinions?????  Thank you in advance...Craig

[chape17]

I have suffered for 10 years with paresthesias, dysthesias, weakness, fatigue, memory loss and now blurred vision.  I have been diagnosed with everything from Lyme disease (later UN diagnosed), RSD, "I don't know, take this pill" to depression.  I had Parvo b19 in 1996 and one MD thought that explained my waxing and waning symptoms.  I had an MRI and LP in 2003 and was told both were normal.  I recently have had SEVERE memory and thought process problems along with debilitating fatigue, had another MRI which showed 8 foci of hyperintensity in the periventricular white matter.  Now I find out I had 4 of those in 2003 which were dismissed as normal findings because I had borderline blood pressure.  I have no lesions in the corpus collossum so, the latest neuro doesn't think it's MS....says, "You're really hard to diagnose, take this pill (Provigill) so you can work".  
Am I crazy?  I have pretty typical symptoms........I think...I'm only a nurse but, what does a girl have to do to get some treatment?

[floridamom2]

Wow, another weanie for the roast!  I am so sorry you have had this experience.  I have also been told my neuropathy in my legs is insignificant and have been dismissed by another weanie neuro.  You know your body and I know you have read how many of us are fighting the same battle to get a diagnosis that correlates with our symptoms.  Stay strong and positive and follow Quix's advice to find another neuro to evaluate you and order the remaining tests you need to figure this out.

Take care and I'll be praying for you!
Kristin

[Jazzyfizzle]

I'm sorry that your experience was less than wonderful at the old C.C.  I can never understand why any doctor would think that someone would take the time and effort (and when you feel like we do- just getting there is half the battle in the first place!) and then of course there is the mega sized bill from the CC to boot! Boy, everyone wants one of those just for laughs and giggles.

Great advice for you from our gang here. Your symptoms sound alot like mine.

Jazzy

[Quixotic1]

Frist I want to apologize for not answering you last night.  I should have said something quick and reposted today, but I was distraught and upset by some of the happenings on the forum and went into another of my stupid emotional dives.  I slept until after 4pm today west coast time, and feel better.  But, you deserved some support yesterday, after all the anticipation of your appointment with the "experts."  They probably read this forum.  I wonder if they (or she) prejudged.

I am so dismayed over your Mellen Center visit.  It sounds like she gave you a pretty thorough hearing, but also a pretty quick dismissal.  When you said you don't "look" like MS, I don't think she meant - that by just looking at you - you didn't look like a person with MS.  In medicine we do often use that expression to explain our whole impression of a person's case, including their history, exam, and findings.  But, it seems to me, as I read how varied people's presentations can be, that she seems a little short-sighted.  Maybe she only wants to deal with "classic" appearing MS, I don't know.

I have to emphasize here that I am nowhere near being a neurologist.  But, in ignoring your compliants of dizziness, severe fatigue, inability to  walk for any real distance and left-sided weakness, she was dismissing you.  Apparently she didn't even feel the need to further the investigation for any type of neuropathy, central or peripheral.  I guess she thought you didn't "fit the mold," she didn't have any further responsibility.  As a physician, I disagree.  It is the MS experts who we depend on to help with further the diagnostic process, even if they don't think it is MS.  By being experts, they have to be very good at ruling it out.  "you don't look like MS" is hardly a rule out.

Furthermore, from what I have read (and this is where my lack of rel neurological knowledge might be in play) by suggesting that what you have is a "small fiber neuropathy"  I think she was giving you "high-tech talk" to get you out of her office.  This sounds harsh, but here is why I think that.  I have looked up "small-fiber neuropathy" on a couple occasions (the latest one being just now).

Small fiber neuropathy refers to the very small - and hard to evaluate - nerves that deal mostly with sensory and autonomic functions in the body.  The classic small fiber neuropathy is the painful, burning toes and feet.   With regard to the legs, small fiber neuropathy is purely "sensory."  As far as I can tell it doesn't explain muscle weakness AT ALL.  Autonomic problems, like impaired blood flow in the extremities, or impaired regulation of blood pressure causing things like "orthostatic hyptotension," (when you stand up your blood pressure falls and you may get lightheaded or faint).  

I can't see any way in the world (though maybe I need to go back and reread your posts) that "small fiber neuropathy" applies to your situation.  As a "topnotch" neurologist I would think she would know this.  But I will do some more reading to make sure I haven't misunderstood the issue.  But, it looks to me right now that she threw out something you wouldn't understand so that she could be done with you and get you out of her office.  Hardly good service from a world-reknown Center for a patient who had paid dearly in time, $$ and family accomodation to fly there for a good evaluation.  I am disappointed.  Here is a link to a review article about small fiber neuropathy:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

I sounds to me like she was calling you a crock.  She apparently didn't believe your history of dizziness and fatigue and didn't want to deal with your apparent weakness.  You are correct about the Romberg test.  It test's your ability to maintain your balance when you remove visual cues.  When you lose your balance with your eyes closed, it indicates a problem with the central processing of how you maintain yourself upright in place.  I am surprised that you fell completely.  Usually one opens their eyes upon feeling the loss of balance and catches themselves.  I, too fall in the dark.  I have nightlights all over the house.  If I get up and find myself in total darkness, I also fall completely.  I only know I'm falling when I hit something, furniture, wall, or floor.  You should see a neuro-otologist and have your dizziness completely worked up, including Computerized Posturography, which is a test that analyzes your positional coping strategies in a changing environment, including with eyes closed.

I also am disappointed that she tried to plant the idea in your mind that your neuropathy might well be undiagnosable and permanent.  It doesn't sound like she even had a clue what was wrong.  It was a little early for her to be hanging "black crepe paper."  She's on the menu for the "weanie roast" tonight.

Your only option is not just the old, California, "weanie" neuro that tried to tell you the radiologist meant to say something other than what he said (with checking with the radiologist himself).  I think you need new blood locally.  Where are you from?  I do believe you absolutely need the workup for the weakness, gait problems, dizziness and fatigue.  I do believe you need the EP's, the LP and nerve studies (I can't remember if you had them.).  But you need a new neuro.  You should not be losing you ability to walk at age 49, and "samll fiber neuropathy" is not a viable diagnosis for this.

I think I've told you before:  you qualify for permanent membership now in Hypo Gamma Chondria.

Quix

[grannyhotwheels]

I'm not sure about going to the same neuro but yes you definetely need to have those test ran.  Also, do not give up.  If the doctor takes the time to run enough test, and really digs in deep, they can find a diagnosis.  I'm sure there is a very low percentage that never gets diagnosed but I'll bet the majority of them are still trying.  Atleast I would be.

I went 3 long years without a diagnosis.  I just recently got one but my doc still thinks there may be something else besides MS.  So he is still digging.

By the way I have been to 5 neurologist and the Mayo Clinic before I was diagnosed.

I'll be praying,
Carol