Question Title: MS ruled out - no diagnosis

Forum: Neurology Forum
Topic: Lupus

Posted by ccf neuro M.D.* on February 14, 1998 at 15:19:15:

In Reply to: MS ruled out - no diagnosis posted by Ann on February 11, 1998 at 13:35:20:

I have been referred by general MD's to two neurologists at separate times because of suspicious of multiple sclerosis. The first visit to a doctor was an episode in which I could not walk without aid because of balance, hot, tingling patches right arm/hand and both legs shin/foot, slurred speech, and dizziness - felt like ground was unstable & vision like looking through water. Did not pass any balance tests, diminished sensation in places, and nystagmus. Ordered MRI, brain only, not enhanced - negative. Saw neurologist 3 months later, nothing to see except poor balance and problems with mini mental function. Complained of extreme fatigue and worsening of problems and weakness with heat. He thought I was just depressed, though I did not feel depressed.

Continued with fatigue and weakness, and episodes of numb face, arms, hands, legs, muscle cramps, incontinence at times. March of 1997, I woke with numbness over right side of face, progressing to near inability to speak, and numbness spreading over entire right side. Balance became extremely bad, and could not walk without holding on to wall or someone. Neurologist could not see me - went to emergency room because of possibility of stroke. The ER doctor said he was pretty sure I had MS, as his father has it and he has studied the subject. He recorded nystagmus, positive Romberg, speech aphasia, other balance test problems. Referred me to neurologist who agreed it sounded like MS, or possibly myasthenia gravis because of my inability to hold my arms up very long & weakness. That neuro did complete MRI, VEP, auditory EP, and spinal. All normal. He began talking about my having a psychological problem.

In August, suddenly developed head-shaking and body tremor upon movement. When I take a step, it is a whole-body shimmy, ending in the head shake. It is now very mild early morning, becoming more exaggerated as I become tired, and I must lie down to stop it & control resulting nausea.

The movement thing remains, and I have to use a cane for balance if I attempt to go anywhere. A few minutes' effort causes extreme fatigue of my muscles. I drop and spill things, have poor depth perception, and my short term memory and thinking processes are affected, especially later in the day. I cannot stand heat, as my balance becomes worse, weakness intensifies, speech problems. I applied for disability, expecting to be denied because I have no diagnosis, but I have put my family in financial difficulty through my not being able to work, and was concerned about what next episode might bring. They sent me to a psychiatrist, because I told them I have problems with memory, etc. The psychiatrist evaluated me and reported cognitive problems, mild dementia, due to neurological disorder NOS. He told me I am not a psychiatric case, but a neurology case, and that it is obvious from looking at me, as well as the pattern of my problems with his questioning. He said there was no way I could work in my condition, and would recommend I be awarded disability. (I report this to show that my problems are very evident, and no longer invisible.)

The neurologist refuses to treat me without positive tests, and does not want me to come back. This entire process has been so humiliating, and I have no history of mental or emotional problems, do not drink, have never used drugs, am a very normal mother of two sons who previously functioned quite well in very responsible positions, and anyone who has ever known me would vouch for my very solid reputation. I am not a doctor chaser, but quite the opposite. Characterization of me as a hypochondriac or hysteric is so far off the mark as to be ridiculous. I never complain, and have never coddled myself, and ignore normal aches & pains, etc.

Visible symptoms are: the movement problem, occasional muscle spasms which pull my fingers into very odd positions, lately "charlie horses" in legs which take days to diminish, and freezing of my hands into position when I squeeze something. I discovered the latter because of my hands freezing into position when I grasped something and held it, such as a saucepan, or laundry basket. I showed this to the neurologist, and he just shrugged. At the followup appointment with him, with my hand at rest, one finger was pointing straight up into the air - showed him this and told him it was painful into my forearm. He would not answer me, but said he doesn't know - he's seen people in psychological comas.

This is very long and complicated, but I am at a loss as to what to do. MS is ruled out, and blood tests ruled out myasthenia gravis, lyme, syphillis, B12 deficiency & Lupus. Only abnormalities are borderline high lymphocytes in spinal, and sed rate of only 24. Is this symptom pattern consistent with anything familiar to you? I began looking on the internet for possible answers. I asked to be treated for the symptoms so that I could work, but since that is not possible, I find myself in the position of having to once again try for a diagnosis simply because of my refusal to allow this to ruin us financially after 27 years of working. Any insights or direction would be most appreciated. Thank you.
---------------------------------------------------------------------------------------------------------------------

Hello Ann,

The only neurological dignoses that I can think of that might possibly explain some of your symtpoms that have not been ruled out by the extensive testing you have apparently undergone are some sort of inherited disorder of muscle metabolism, or a mitochondrial disorder, which often affect vision, muscle strength and fatigue, and sometimes thinking. If you are having alot of problems relaxing your muscles or with your hands etc. going into uncontrollable positions or postures, you may have a problem known as dystonia, a movement disorder. Sometimes when it is early on in such a disorder, the movements can be easily mistaken for psychological pseudo-movement disorders. If you do have a serious neurological disorder as the explanation for your problems, this should become very clear over the next few months to a year, as these sorts of things tend to progress. There are medications for some of the movement disorders that can help. If ultimately no neurologic explanation is found, it is possible that your symptoms could represent physical symptoms of an undelying psychological disorder. People's bodies can react very differently to stress, and in some people, stress manifests itself purely in physical ways, with so-called psychosomatic symptoms or disorders. Thus, the fact that your mood is normal does not necessarily exclude the possibility of such a problem, and you should understand that having such a problem, if you do, does not mean you are crazy or a psychopath, but merely that your body has chosen to express whatever stresses it perceives in this way as opposed to more garden variety common responses like anxiety or overt depression. A battrey of tests known as neuropsychological testing can be very helpful in sorting out the psycholgical from the neurological, and might be very worthwhile in your case. Sometimes a useful maneuver to try is a medication used for anxiety and/or depression and see if it results in an improvement in the symptoms. If it does, this is helpful both diagnostically and therapeutically. If not, one would have to more carefully think about other rare neurologic disorders that may explain the symptoms. If you are near the Cleveland area and would be interested in a second opinion from one of our staff neurologists and/or psychiatrists, we would of course be happy to provide you with an evaluation. The number is 1-800-223-2273 extension 45559. Good Luck!!! Please remember that the information provided on the forum is intended for general informational purposes only, and that the actual diagnosis, treatment, and evaluation of your particular illness should be performed strictly in conjunction with your treating physician(s).

[Neurology Forum]      [Neurology Forum Archives]