Trigeminal Neuralgia
Ronald Brisman, M.D.

How Many Have Trigeminal Neuralgia?

How many people in the USA have trigeminal neuralgia (TN)?

We don’t really know how many people in the USA have trigeminal neuralgia (prevalence). We may make a rough estimate that there is a range of 66,500 to 280,700 people in the USA who have trigeminal neuralgia as of July 4, 2013 (Table 1).

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How do we estimate the number of people in the USA who have trigeminal neuralgia?

We estimate the number of people in the USA who have trigeminal neuralgia (#TN) from the number of people in the USA who have multiple sclerosis (#MS), the percent of people with multiple sclerosis who have trigeminal neuralgia (%MSTN) and the percent of people with trigeminal neuralgia who have multiple sclerosis (%TNMS) . Thus (#TN) = (#MS) multiplied by (%MSTN) divided by (%TNMS) (7).

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Why is our estimate so imprecise?

The estimate is imprecise because it depends on certain variables that are not definitively known. Approximate estimates have been given for the number of people in the United States with MS (#MS = 214,000 to 444,000 [Table 1] for probable or possible MS and 169,000 to 350,900 for definite or probable MS). The number of people with multiple sclerosis will vary with different geographic locations because of ethnic (genetic) and environmental factors (8). The percentage of people with definite MS who have TN (%MSTN) is 2.0 % based on two large studies (4,9) and was 0.9 in other studies where it was not clearly determined whether patients had definite or also possible MS (7). The percentage of people with TN who have MS (%TNMS) is 2 to 8 % with an average of 2.5 % (6) or 2.9 ( 7 ). The year that the determination has been made will also affect our estimate of the number of people with TN because there are more people in the USA each year and the population is getting older (TN occurs with greater frequency in older people).

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Table 1. United States July 4, 2013, Prevalence

Patients with Multiple Sclerosis (MS) with or without Trigeminal Neuralgia (TN)

Patients with Trigeminal Neuralgia (TN) with or without MS

Source

Probable or
Possible MS

Per 100,000

Per 316,000,000
  (US Population July 4, 2013)
     MS                    TN (7)
Probable     %MS with TN=0.9

or Possible  %TN with MS=2.9

Per 316,000,000
    (US Population July 4, 2013)
     MS                       TN
                       %MS with TN=2.0~

Definite         %TN with MS=2.5 (6 )

Baum (2)      67.9 214,451               66,554 169,416              135,533  
Nelson (5) 81.4 257,249               79,836 203,226              162,581
Nelson (5) 95.0 300,124               93,142 237,097              189,678
Anderson (1) 100.4 317,264               98,461 250,642              200,514
Anderson (1) 140.6 444,170              137,846 350,899              280,719

~ Based on definite MS (4,9)



Baum (2) figures are for probable and possible MS. This is data from the 1976 US Census survey. He has 57.8 per 100,000 population with probable and possible MS. (79% are probable and 21% are possible MS). We use his figures of prevalence of MS by age group and apply this to the figures of numbers of people per age group in the US Census of 2009 (3). We get a figure for the entire USA of 67.86 people with multiple sclerosis per 100,000 people. Multiply 67.86 by 3160 (US population on July 4, 2013 divided by 100,000) to get the number of people in USA in July 2013 who have probable or possible MS (214,451).


Nelson (5) suggests that Baum’s figures should be increased by 20 to 40% to account for cases of MS that would be missed if one did not include MS service organizations and neurology practice chart reviews. Doing this, we get from 81 to 95 cases of MS per 100,000 of definite, probable or possible MS.


Anderson (1) suggests that in 1990, the number of people in the USA with definite, probable or possible MS was 250,000 to 350,000. This is also based on including not only medical records but also rolls of the National Multiple Sclerosis Society. That would be 100.4 to 140.56 per 100,000 or 317,264 to 444,170 people in 2009 when the US population was 316,000,000.


Data from cerebrospinal fluid (CSF) and magnetic resonance imaging (MRI) were not used for diagnosis in most cases, which may have falsely decreased the number of patients with MS.

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REFERENCES:

  1. Anderson DW, Ellenberg JH, Leventhal CM, Reingold SC, Rodriguez M, Silberberg DH: Revised estimate of the prevalence of multiple sclerosis in the United States. Ann Neurol 31:333-336, 1992.

  2. Baum HM, Rothschild BB: The incidence and prevalence of reported multiple sclerosis. Ann Neurol 10:420-428, 1981.

  3. Census, US Government: Table 7. Resident population by sex and age: 1980 to 2009. http://www.census.gov/compendia/statab/2011/tables/11s0007.pdf

  4. Hooge JP, Redekop WK: Trigeminal neuralgia in multiple sclerosis. Neurology 45:1294-1296, 1995.

  5. Nelson LM, Hamman RF, Thompson DS, Baum HM, Boteler DL, Burks JS, Franklin GM: Neuroepidemiology 5:17-28, 1986.

  6. O’Connor AB, Schwid SR, Herrmann DN, Markman JD, Dworkin RH: Pain associated with multiple sclerosis: Systematic review and proposed classification. Pain 137:96-111, 2008.

  7. Penman J: Trigeminal Neuralgia in Handbook of Clinical Neurology, edited by P.J. Vinken and G.W. Bruyn, Volume 5, Chapter 28, 296-322, 1968.

  8. Rosati G: The prevalence of multiple sclerosis in the world: an update. Neurol Sci 22:117-139, 2001.

  9. Solaro C, Brichetto G, Amato MP, Cocco E, Colombo B et al. The prevalence of pain in multiple sclerosis. A multicenter cross-sectional study. Neurology 63:919-921, 2004.


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