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absence of a other affected family members does not exclude HSP from consideration Both UMN-D ALS and HSP typically present with spasticity in the legs Asymmetry at onset, the presence of early arm involvement, rapid progression, and absence of large ber sensory loss would favor UMN-D ALS In UMN-D ALS, the DNA mutation analysis for HSP is available but at considerable cost and for only a limited number of currently recognized genotypes Lastly, pyramidal tract ndings may occur in certain forms of distal spinal muscular atrophy and Charcot Marie Tooth disease Neither would be commonly confused with ALS in view of the distal symmetric pattern of weakness, slow progression, and frequent cavus foot deformities ALS remains a clinical diagnosis supported by the results of both positive and negative ancillary testing With the exception of DNA mutational analysis for SOD1 mutations causing fALS, there are no tests that con rm a diagnosis of ALS At the time of initial evaluation, ALS may be suspected but the clinical features are not developed to the extent that the neurologists feel con dent in sharing their concerns with their patients The physician frequently feels con icted as to when to have this conversation To do so prematurely hazards the possibility of being wrong Additionally, patients may lack con dence in someone who confronts them with a diagnosis of this magnitude without the appearance of careful consideration and testing Balanced against this is the patients need for answers Perceived foot dragging and uncertainty may have equally deleterious effects on their trust in their physicians Disclosing the suspected diagnosis as early in the course as possible, following exclusion of reasonable differential diagnostic considerations, with demonstration of unequivocal progression both within and outside of initially affected regions, would seem to be a reasonable approach Many neurologists will not wait for a patient to ful ll EEC for de nite or probable ALS before disclosing their suspicions8 As mentioned, it is estimated that up to 25% of patients with ALS will die without having ful lled the de nite or probable EEC criteria9 Additionally, it has been recognized that the EEC criteria at diagnosis, eg, de nite, probable, possible, or suspected, do not correlate with clinical course and survival15 In view of the implications of an ALS diagnosis, and the lack of a con rmatory test in most cases, patients are frequently counseled to seek a second opinion from a knowledgeable source.

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Currently, there are no effective treatments that can reverse or arrest disease progression in ALS As a result, the major goals of MND/ALS management are to slow disease progression to the extent possible and main-

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tain independent patient function, safety, and comfort In 1999, an American Academy of Neurology Task Force constructed a Practice Parameter outlining the evidence basis for the care of patients with ALS56 Other comprehensive management reviews are available57 In 1994, Rilutek was identi ed as the rst and only disease-speci c treatment to date that positively affected the natural history of the disease7 The dose is 50 mg twice a day Its modest bene t results in an approximate 10% slowing of disease progression Unfortunately, this bene t is imperceptible to the patient who neither feels nor functions better It is an extremely expensive drug Approximately a quarter of patients do not tolerate the drug due to upper gastrointestinal side effects Reversible hepatotoxicity may occur with an associated requirement for monitoring of liver function tests Whether the bene t of Rilutek exceeds its cost is a candid conversation that should take place with patients and their families The care of patients with ALS and their families involves education, counseling, and symptom management Table 4 8 lists the most common problems that may af ict a patient with MND/ALS and some of the treatment options that are available Two interventions that are often met with resistance by patients are percutaneous gastrostomy and noninvasive positive pressure support (NIPPV) In view of this, it may be prudent to introduce these concepts prior to the point in patient s illness when these are really needed Both should be introduced with the idea that these improve quality of life rather than duration of life, even though the latter may be achieved to a certain extent as well There are no absolute criteria that provide optimal percutaneous gastrostomy timing Loss of weight of >10% of baseline weight, doubling of eating time, or recurrent coughing or choking during eating are the most common indicators that are used Ideally, a percutaneous gastrostomy should be inserted before the forced vital capacity falls below 50% of predicted to limit risk associated with the procedure56 NIPPV is typically recommended when the patient is symptomatic from shortness of breath, when disturbed sleep is attributed to hypoventilation, when symptoms attributable to hypercapnia such as morning headache occur, or when forced vital capacity decreases to less than 50% of predicted Usually, initial use occurs at night when hypoventilation is most likely to occur NIPPV appears to have the most dramatic effects on disease survival of any treatment options available In the United States, most third party payers will not reimburse for NIPPV treatment in ALS unless the vital capacity has fallen to less than 50% of predicted or hypercapnia has been documented This may be extremely problematic in patients who are symptomatic but who have yet to ful ll the aforementioned diagnostic criteria Optimal management of the patients with ALS and their families requires extensive effort and resources.

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1 Make sure you are working in the same file from the last exercise 2 On the Stage, select the runner_mc movie clip, shown in Figure 8-1 Notice

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